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A

ABDR

The HLA antigens considered for most matching strategies between a potential recipient and a donor.

ABO Blood Type

The classification of human blood into four groups: A, B, AB, and O.

Action Period

Breakthrough Collaborative term. The period of time between Collaborative Learning Sessions when spread teams work within their organization to meet their spread goals. Participants focus on the spread of ideas and processes within their own organization during this period while staying in continuous contact with other participants and faculty.

Acute Rejection

The host recognizes the graft as foreign and mounts an immunological attack on the graft tissues. Most acute rejections occur in the first year.

Ad Hoc Committee on the Public Solicitation of Organs

Formed in 2004 to consider all issues relating to the process of public solicitation of organs for donation, including impact on potential donors, transplant candidates, and their families as well as society at large; ethical and social impact; relationship of cost to benefit; legal issues and related public policy and; communications media issues. The broader implications presented by these issues, rather than individual patient issues or disputes, are considered.

Ad Hoc International Relations Committee

The ad hoc committee formed to consider issues relating to importing and exporting organs and providing transplant services to nonresident aliens.

Advisory Committee on Organ Transplantation (ACOT)

Formed by HHS in 2000 and comprising members appointed by the Secretary, the ACOT was established to provide additional input regarding HHS oversight of U.S. organ donation and transplantation activity and policies and their affect on patients.

Aim

Breakthrough Collaborative term. An aim for spread is an explicit statement summarizing what the organization seeks to achieve in its spread effort. It is the responsibility of executive leaders to ensure that the spread aim is aligned with the strategic goals of the organization.

Albumin

Albumin is a protein manufactured by the liver. Albumin is used in the PELD calculations as a measure of the severity of liver disease.

Allocation

The process of determining how organs are distributed. Allocation includes the system of policies and guidelines, which ensure that organs are distributed in an equitable, ethical and medically sound manner.

Allocation Analysis

Review of the allocation of an organ to determine whether the allocation policies were followed. The analysis is performed by the OPTN contractor through the peer review process of the OPTN Membership and Professional Standards Committee.

Allocation Policies

Rules established by the OPTN to guide and regulate organ allocation and distribution in the United States.

Allograft

An organ or tissue that is transplanted from one person to another of the same species: i.e. human-to-human. Example: a transplanted kidney.

Alternative Allocation System (AAD System)

Any Board-approved system for local organ allocation or distribution that is different from the standard allocation or distribution system for that organ. Alternative allocation systems are designed to increase organ availability and/or organ quality, reduce or address an inequity in allocation unique to the local area, and/or testing a stated hypothesis intended to benefit the allocation/distribution system overall. There are different kinds of Alternative Allocation Systems: a) Alternative local units (ALUs), b) Sharing arrangements and agreements, c) Alternative point assignment protocols, and d) any combination of the components listed here, See also Alternative local unit (ALU), Sharing arrangements and agreements, Alternative point assignment protocols.

Alternative Local Unit (ALU)

A subdivision of an OPO’s Donation Service Area (DSA), approved by the Board to function as a distinct area for organ distribution. See also Alternative Allocation or Distribution System, Regions.

Alternative Point Assignment Protocols

A Board-approved modification to the point system criteria defined in Policies 3.5 through 3.11, applicable to members participating in an approved AAD System. Members participating in an approved alternative point assignment protocol are required to a) stay aware of all provisions in OPTN Bylaws and Policies, b) evaluate the continued benefit of the protocol in light of the policy requirements and overall objectives, and c) obtain Committee and Board approval for any modifications to the protocol.

American Association of Blood Banks (AABB)

An international, not-for-profit association consisting of approximately 1,800 institutions and 8,000 individuals, including physicians, scientists, administrators, medical technologists, nurses, researchers, blood donor recruiters and public relations personnel. Members are located in all 50 states and 80 countries. AABB is an OPTN member in the Medical Professional/ Scientific Organization category.

American Society for Histocompatibility and Immunogenetics (ASHI)

A national not-for-profit association of clinical and research professionals including immunologists, geneticists, molecular biologists, transplant physicians and surgeons, pathologists and technologists. ASHI is an OPTN member in the Medical Professional/ Scientific Organization category whose president serves on the OPTN Board of Directors.

American Society of Multicultural Health and Transplant Professionals (ASMHTP)

A national not-for-profit organization whose mission is to promote organ and tissue donation and transplantation among minorities, and serve in a national advisory capacity for research and education on these and other health related issues. ASMHTP is an OPTN member in the Medical Professional/ Scientific Organization category.

American Society of Transplant Surgeons (ASTS)

A non-profit membership organization of transplant surgeons. ASTS is an OPTN member in the Medical Professional/ Scientific Organization category whose president serves on the OPTN Board of Directors.

American Society of Transplantation (AST)

Founded in 1982, AST is a membership organization of more then 2,200 transplant professionals dedicated to research, education, advocacy and patient care in transplantation. Our goal is to offer a forum for the exchange of knowledge, scientific information and expertise in the field of transplantation. AST is an OPTN member in the Medical Professional/ Scientific Organization category whose president serves on the OPTN Board of Directors.

American Transplant Congress (ATC)

The joint annual meeting of the American Society of Transplantation (AST) and the American Society of Transplant Surgeons (ASTS) designed for physicians, surgeons, scientists, nurses, organ procurement personnel, and pharmacists who are interested in the clinical and research aspects of solid organ and tissue transplantation.

Anoxia

Usually refers to lack of oxygen to the brain.

Anti-Rejection Drugs (immunosuppressive drugs)

Drugs that are used to prevent and/or treat rejection of a transplanted organ.

Antibody

A protein molecule produced by the immune system in response to a foreign body, such as virus or a transplanted organ. Since antibodies fight the transplanted organ and try to reject it, recipients are required to take anti-rejection (immunosuppressive) drugs.

Antigen

An antigen is any substance that causes your immune system to produce antibodies against it. An antigen may be a foreign substance from the environment such as chemicals, bacteria, viruses, pollen, or foreign tissues. An antigen may also be formed within the body, as with bacterial toxins.

Antigens determining zero mismatch kidneys (ABDR)

The HLA antigens considered for most matching strategies between a potential recipient and a donor.

Arbor Research Collaborative for Health

Located in Ann Arbor, Michigan, Arbor Research Collaborative for Health (formerly University Renal Research and Education Association), is a private, nonprofit organization established for the purpose of collecting information and conducting worldwide epidemiological, clinical, and economic studies of organ failure and related diseases. Arbor Research Collaborative for Health’s mission is to conduct research, to distribute information focused on improving patient care, and to provide analysis and research training opportunities for medical professionals. Arbor Research Collaborative for Health, in collaboration with the University of Michigan, is responsible for the administration of the Scientific Registry of Transplant Recipients (SRTR).

Arterial Blood Gases (ABG)

Test used to measure the pH (acidity), oxygen content, and carbon dioxide content of the blood in order to evaluate respiratory diseases and conditions that affect the lungs.

Ascites

Build-up of fluid in the abdomen, usually associated with liver disease.

Association of Organ Procurement Organizations (AOPO)

A national nonprofit organization of organ procurement organizations. AOPO is an OPTN member in the Medical Professional/ Scientific Organization category whose president serves on the OPTN Board of Directors.

Autograft

A graft of skin or other tissue that is taken from the body of the person to be grafted rather than from another person.

Auxiliary Transplant

A type of liver transplant in which the patient's liver remains within the body, while another whole or partial liver is transplanted just beneath or adjacent to the recipient's.



B

Benchmark

A measurement or standard that serves as a point of reference by which performance of a process is measured.

Benign

Not malignant.

Best Practices

Processes and activities that have been shown in practice to be the most effective.

Biliary atresia

The congenital closure, or near closure, of the bile ducts. The most common indication for liver transplantation in children comprising 60 to 70 percent of all candidates.

Bilirubin

A breakdown product of hemoglobin from blood cells, the results of which are used in the MELD and PELD calculations as a measure of the severity of liver disease.

Biopsy

A tissue sample from the body, removed and examined under a microscope to diagnose for disease, determine organ rejection, or assess donated organs or tissues.

Blood Type

One of four groups (A, B, AB or O) into which blood is classified. Blood types are based on differences in molecules (proteins and carbohydrates) on the surface of red blood cells.

Blood Vessels

The veins, arteries and capillaries through which blood flows in the body. Certain blood vessels can be donated and transplanted.

Body Mass Index (BMI)

A measure of body size, calculated as weight in kilograms divided by height in meters squared.

Brain Death

Irreversible cessation of cerebral and brain stem function; characterized by absence of electrical activity in the brain, blood flow to the brain, and brain function as determined by clinical assessment of responses. A brain dead person is dead, although his or her cardiopulmonary functioning may be artificially maintained for some time.

Breakthrough Collaborative

See Organ Donation Breakthrough Collaborative (ODBC), Organ Transplant Breakthrough Collaborative (OTBC).



C

Cadaveric

Deceased.

Cadaveric Transplant

The transplant of an organ from a deceased donor. The preferred term is Deceased Donor Transplant.

Candidate

A person registered on the organ transplant waiting list. When an organ is offered on behalf of the candidate, he or she is then referred to as a Potential Transplant Recipient (PTR).

Cardiac

Having to do with, or referring to, the heart.

Cardiac death

Death resulting from the cessation of heart function; an individual who suffers a cardiac death can donate organs if the organs can be promptly cooled.

Cardiac Output (CO)

The volume of blood pumped out of the heart per minute.

Cardiologist

A specialist who is an expert in the diseases of the heart and associated blood vessels.

Cardiomyopathy

A weakening of the heart muscle or change in heart muscle structure that causes varying degrees of reduced heart function.

Censoring

Typically, a statistical term used in survival analysis to indicate an observation in which the outcome of interest has not yet occurred. For example, in a graft survival analysis, a transplant with a functioning graft may be censored at the last follow-up date because the graft is still functioning. Mathematically, censored observations are included in the analysis up to the point in time at which they are censored.

Center of Excellence

An insurance term for a medical center that will negotiate a discounted price even if that center is not part of the insurance's company's preferred provider network (PPO).

Centers for Medicare & Medicaid Services (CMS)

Formerly titled the Health Care Financing Administration, CMS is an agency of the U.S. Department of Health and Human Services (HHS) responsible for administering the Medicare and Medicaid programs, which provide health care coverage to America’s aged, disabled and indigent populations.

Central Venous Pressure (CVP)

The venous pressure as measured at the right atrium of the heart, obtained by means of a central venous catheter whose distal end is attached to a manometer.

Cerebrovascular accident (CVA)

Also known as a stroke, occurring when there is an occlusion of an arterial vessel going to the brain, or when there is bleeding into the brain.

Change Concept

Breakthrough Collaborative term. A general idea for changing a process. Change concepts are usually at a high level of abstraction, but evoke multiple ideas for specific processes. Establish strong culture of accountability for results, use data-driven decision making to determine priorities, and create and maintain visual presence of OPO staff in donor hospitals, are examples of change concepts.

Chief Complaint

The primary symptom that brought the patient to the physician.

Child-Turcotte-Pugh (CTP) Score

A measurement of liver dysfunction that was used in OPTN liver allocation policy between January 19, 1998, and February 26, 2002. The MELD score has replaced it for allocation purposes, but CTP is still used by some to assess function, and remains a measure for minimum listing eligibility.

Chimerism

When one organism possesses cells with more than one genetic background, as in transplant recipients.

Chronic

Developing slowly and lasting for a long time, possibly the rest of a person's life. For example: chronic kidney failure.

Chronic obstructive pulmonary disease (COPD)

Chronic obstructive pulmonary disease is a type of lung disease in which the lungs are damaged and results in difficulty breathing. The air passageways in people with COPD have become partly obstructed, impairing airflow in and out of the lungs. The air passageways also become clogged with mucus. A large percentage of COPD cases are caused by cigarette smoking; but there are other causes or contributory factors such as chemicals and other lung irritants.

Chronic Rejection

Slow, continuous immunological attack of the host immune system on the transplanted organ usually resulting in progressive loss of organ function.

Cirrhosis

A disease of the liver in which normal, healthy tissue is replaced with nonfunctioning fibrous scar tissue and healthy, functioning liver cells are lost; usually occurs when there is a lack of adequate nutrition, an infection or damage caused by alcohol abuse.

Clamp time

The time at which the flow of blood to a particular organ has been clamped off during a procurement.

Clinical Triggers

Criteria for “imminent death” mutually established by the hospital and OPO which prompt the hospital to make a timely notification to the OPO.

Cockcroft-Gault Formula

A calculation used as a measure of kidney function by estimating creatinine clearance. It is calculated from a patient’s serum creatinine, age, weight, and gender. For males: (140-age)*weight/(72*creatinine), where age is measured in years, weight is measured in kilograms and creatinine is measured in mg/dL. The same formula multiplied by 0.85 is used to estimate creatinine clearance for females.

Cohort

A group of individuals sharing one or more characteristics that are observed during a designated time period.

Cold Ischemia Time (CIT)

The amount of time an organ spends being preserved after recovery from the donor.

Collaborative

A time-limited effort (usually 6 to 12 months) of multiple organizations that come together with faculty to learn about and to create improved processes in a specific topic area. The expectation is that the teams share expertise and data with each other, thus “everyone learns, everyone teaches.”

College of American Pathologists (CAP)

The principal organization of board-certified pathologists organized to serve and represent the interest of patients, pathologist, and the public by fostering excellence in the practice of pathology and laboratory medicine.

Committee-Sponsored Alternative System

A Board-approved Alternative Allocation/Distribution System developed by one or more OPTN committees that seeks to address concerns particular to multiple local areas but not nationally, or for which consensus to modify the standard policy for the nation as a whole has not been achieved. See also Alternative Allocation or Distribution System.

Committees

The OPTN currently maintains approximately 20 standing committees, a fluctuating number of ad hoc committees (established by the President to address a specific issue as it arises), subcommittees and joint subcommittees (created and maintained by standing committees). Committees are comprised of professionals, at least one Patient/ Public representative, Minority Affairs Committee Representative, Pediatric Committee Representative, and one or more SRTR representatives. Permanent Standing Committees also include representatives form each of the 11 Regions. HRSA’s OPTN Project Officer and Director of DoT, or their designees, serve as ex-officio non-voting members of all committees. Each committee is provided administrative, policy, analytic, clinical and technical support by one or more committee liaisons from the UNOS staff.

Communications Committee

The standing OPTN committee charged with defining communications objectives and the needs of OPTN membership, the public, the transplant community at large and the media with respect to OPTN activities.

Compliance

1) Adherence of patients to medical advice and instructions, especially immunosuppressive drug schedules. 2) Adherence of OPTN members to the policies and bylaws of the OPTN.

Computerized Axial Tomography (CT or CAT Scan)

A series of detailed pictures of areas inside the body created by a computer linked x-ray machine.

Confidence Interval

In statistical analysis, sampling techniques are used to provide an estimate of some aspect of a particular population, for example the average age. This avoids having to take a census of the entire population. Because the estimate is based on a sample and not the entire population, the estimate is subject to error. A confidence interval provides a range of values about the estimate within which the true value (the value of the parameter based on the entire population) lies. The smaller the confidence interval, the more precise the statistical estimate.

Conflict of Interest

A situation in which a board or committee member, employer or institution might benefit from his or her actions as an OPTN volunteer. When a board or committee member has a personal or institutional interest in the outcome of a matter, the member is legally required to disclose the conflict at the beginning of the discussion, and abstain from voting on the matter. Board and committee members are required to sign a conflict of interest agreement when they begin their term of service to the OPTN.

Congenital

Describes a disease or condition with which someone is born.

Congestive heart failure (CHF)

Any condition that causes the heart to lose its pumping ability to pump blood efficiently. Fluid backs up in the lungs and may also accumulate in the legs.

Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA)

Federal health coverage protection that requires employers of 20 or more employees to provide employees, and their dependants, the right to continue health insurance benefits when a qualifying event occurs. COBRA lasts for 18 months. OBRA is the federal law that allows an employee to continue health insurance benefits after COBRA, if he/she has elected COBRA coverage due to a Social Security approved disability. OBRA is an 11 month extension of COBRA. See also Omnibus Budget Reconciliation Act (OBRA).

Continuous ambulatory peritoneal dialysis (CAPD)

Continuous dialysis procedure involving a dialysis solution being emptied into the patient's abdominal cavity. This solution removes waste products from the blood, allowing the patient greater freedom of movement.

Conversion, conversion rate

The percentage of times a death meeting eligible criteria (eligible death) becomes an actual donor.

Coronary artery disease

The coronary arteries supply blood (and oxygen) to the heart muscle. When arteries are partially or completely obstructed, the blood and oxygen supply to the heart muscle is impaired. The most common cause of a heart attack.

Corticosteroid

A synthetic hormone used to reduce the body's normal immune reaction to infection and foreign tissue, such as a transplanted organ. Prednisone is a corticosteroid.

Creatinine

Found in the blood, it is a waste by-product of muscle; creatinine level in the blood is one of the key measures of kidney function.

Criteria (Medical Criteria)

A set of clinical or biologic standards or conditions that must be met.

Critical Pathway for the Organ Donor

A "care map" of an organ donor's treatment plan designed to help critical care staff and procurement coordinators understand, collaborate, and follow the steps required for effective donor management.

Crossmatch

A blood test to determine compatibility between donor and recipient. A positive crossmatch indicates incompatibility. If the crossmatch is "negative," then the transplant may proceed. Crossmatching is performed for many organ transplants.

Culture and Sensitivity (C+S)

Culture and Sensitivities tests are done to determine which bacteria cause an infection and the best antibiotic to treat the infection.

Cyclosporine

A drug used to prevent rejection of the transplanted organ by suppressing the body's defense system. Considered an immunosuppressant.

Cyst

An encapsulated collection of fluid.

Cystic Fibrosis (CF)

A chronic, progressive, and frequently fatal inherited disease of the body's mucus glands.

Cytomegalovirus (CMV)

A herpes virus that usually causes a mild infection. Important because it can become deadly in an immunocompromised transplant recipient. Deceased donors are screened for the presence of CMV antibodies.



D

Data Advisory Committee (DAC)

Dissolved upon effective date of the 2005 OPTN contract, this committee was charged with overseeing all recommendations to the Board of Directors regarding specifications for collecting data on the full continuum of events including pre- and post-transplant events. The DAC also had primary responsibility for recommending to the Board data release policies, data collection procedures, and specific OPTN database elements necessary for data analysis and research functions in support of the OPTN and the Scientific Registry.

Data Working Group (DWG)

Dissolved upon effective date of the 2005 OPTN contract, this group was mutually operated by the OPTN and SRTR contractors, and comprised representatives from both organizations as well as members of the transplant community and government staff. The DWG was charged with in-depth review and consideration of needed revisions (additions and deletions) to the OPTN database in order to comply with contract and regulatory requirements and to further solid organ transplantation research. The recommendations of the DWG were presented to the Data Advisory Committee (DAC) for consideration.

Death Rate

The percentage of deaths observed in a group of patients, also referred to as the rate of mortality. In statistics, the death rate is calculated as the number of patient deaths observed per 1,000 patient years. Patient years are calculated based on the actual amount of follow-up time after transplant that recipients are studied.

Deceased Donor

An individual from whom at least one solid organ is recovered or the purpose of transplantation after suffering brain death or cardiac death.

Deceased Donor Registration Form (DDR)

The form submitted by the OPO when reporting a new donor to the OPTN. The form contains information on donor demographics, cause of death, procurement and consent, current clinical measures, medical and social history and organ recovery information.

Deceased Donor Transplant

The transplant of an organ from a deceased donor.

Delayed Graft Function (DGF)

A condition in which the transplanted organ does not function properly after the transplant. Many kidneys have a delay before they begin to function adequately. Kidneys can sometimes take as long as 3 to 4 weeks to achieve adequate function. When this occurs, a kidney recipient needs dialysis until the kidney starts to function.

Department of Health and Human Services (DHHS or HHS)

The department of the federal government responsible for health-related programs and issues.

Diabetes

A disease in which the pancreas does not manufacture an adequate amount of insulin. As a result, the level of sugar in the blood is too high. A leading factor in heart and kidney disease.

Dialysis

A mechanical process designed to partially perform kidney functions, including correcting the balance of fluids and chemicals in the body and removing wastes. See Hemodialysis and Peritoneal Dialysis.

Diastolic Blood Pressure

The bottom number in the blood pressure measurement (80 in a blood presure of 120/80), indicating the pressure in the arteries when the heart is at rest.

Direct Offer

An organ offer that is made by a host OPO directly to another OPO or a transplant center for a specific recipient.

Directed Donation

The donation of an organ to a specifically identified recipient. These instructions are given by a donor or donor family member.

Division of Transplantation (DoT)

The office of the Federal government whose principal responsibilities include the oversight of management of the Organ Procurement and Transplantation Network (OPTN), the Scientific Registry of Transplant Recipients (SRTR) and the National Marrow Donar Program (NMDP) contracts; public education to increase organ and tissue donation; and technical assistance to organ procurement organizations (OPOs).

Domino Transplant

A procedure in which an organ is removed from one transplant candidate and immediately transplanted into a second patient, with the first patient receiving a new organ from a deceased donor.

Donate Life America

Formerly the Coalition on Donation, Donate Life America is a national not-for-profit alliance of local affiliates and corporate partners that have joined forces to inspire all people to Donate Life® through organ, eye and tissue donation. At the core of the organization’s education efforts are the ongoing qualitative and quantitative research of public attitudes about organ and tissue donation and the development and dissemination of effective, motivating public service campaigns. Distributed at the national and community level, these multi-media campaigns effectively communicate two core messages: “Transplants give people their life back,” and “Here is how you can help.” Founded by the transplant community in 1992, the Coalition publishes brochures, program kits and other materials; provides technical assistance, training, information and referral services; and coordinates the National Campaign for Organ and Tissue Donation. It is comprised of national organizational members and local coalitions across the U.S. that coordinate donation related activities at the local level. Volunteer advertising agencies work with the Coalition and its committees to develop targeted mass media campaigns.

Donate Life, Done Vida

Since 2000, Donate Life and its Spanish-translation Done Vida have been the primary slogans and service mark logos of the Coalition on Donation, promoting donation as a forthright, life-affirming action. The Coalition encourages the widest possible use of its logos and materials in order to provide a sustained, unified national message about donation. Guidelines and policies are in place to ensure consistency, appropriate use, and the integrity of these national logos and materials.

Donation after Cardiac Death (DCD)

Recovery of organs and or tissues from a donor whose heart has irreversibly stopped beating, previously referred to as non-heart-beating or asystolic donation.

Donation Rate

In statistics, the number of actual donors where at least one organ is recovered for the purpose of transplant. One method of computing donation rate is as a percentage of a specified population (e.g., eligible deaths divided by donors recovered).

Donation Service Area (DSA)

The geographic area designated by CMS that is served by one organ procurement organization (OPO), one or more transplant centers, and one or more donor hospitals. Formerly referred to as Local Service Area or OPO Service Area.

Donor

Someone from whom at least one organ or tissue is recovered for the purpose of transplantation. A deceased donor is a patient who has been declared dead using either brain death or cardiac death criteria, from whom at least onevascularized solid organ is recovered for the purpose of organ transplantation. A living donor is one who donates an organ or segment of an organ for the intent of transplantation.

Donor Histocompatility Form (DH)

The form submitted by the histocompatibility laboratory containing HLA information of a deceased donor when at least one organ is recovered with the intent to transplant, or a living donor's HLA typing and haplotype information for living donors.

Donor Management

The process and critical pathways used to medically care for donors in order to keep their organs viable until organ recovery can occur.

Donor Pool

A group of people eligible to donate an organ.

Donor Registries

Available 24 hours a day, seven days a week, online registries provide authorized professionals access to a confidential database of registered organ donors, allowing easy and quick confirmation of an individual's consent to organ donation. All registries are voluntary and some are affiliated with the local motor vehicle bureau, while others are independently operated or OPO-based.

DonorNet® 2007

A redesign of the original DonorNet application, a component of the UNetsm system. DonorNet focuses on the registration of deceased donors, organ matching, organ offers and placement. The 2007 redesign enables OPOs to input and uniformly display donor data, to make multiple simultaneous electronic organ offers quickly and efficiently and to present donor information in a consistent manner to transplant centers. This new organ offer process focuses priority on quickly registering the organ refusals so the donor coordinator can focus limited time and resources on those transplant centers that have indicated interest in the organ. Effective January 1, 2007.



E

Early Adopter

Breakthrough Collaborative term. In the improvement process, the opinion leader within the organization who is willing to try new ideas (introduced by innovators) and whose positive results attract others in the organization to adopt the successful changes. [Rogers E. Diffusion of Innovations. 4th ed. New York, N.Y.: The Free Press; 1995].

Early Majority/Late Majority

The individuals in the organization who will adopt a change only after it is tested by an early adopter (early majority) or after the majority of the organization is already using the change (late majority). [Rogers E. Diffusion of Innovations. 4th ed. New York, N.Y.: The Free Press; 1995].

Effective Date of Contract (EDOC)

The date when a contract goes into effect. The EDOC for the current OPTN contract is September 30, 2005.

Effective Request Process

A process developed collaboratively between the hospital and the OPO that culminates in the request to the family using tested and proven methodology.

Electronic Organ Placement Working Group

Established in 2005 by the Operations Committee to guide the development and implementation of the DonorNet® redesign, and to establish direction regarding a number of specific technical, procedural and policy questions and concerns related to electronic notification and organ placement. The group includes representatives from OPOs, Transplant Centers and Histocompatibility Labs, as well as AST, ASTS, AOPO and NATCO.

Eligible Death

Although it is recognized that this definition does not include all potential donors, for reporting purposes for DSA performance assessment, an eligible death for organ donation is defined as the death of a patient 70 years old or younger who ultimately is legally declared brain dead according to hospital policy, and: independent of family decision regarding donation or availability of next-of-kin; independent of medical examiner or coroner involvement in the case; independent of local acceptance criteria or transplant center practice; and who exhibits none of the following :
  • Active infections (specific diagnoses) [Exclusions to the Definition of Eligible] :
    -Bacterial: Tuberculosis; Gangrenous bowel or perforated bowel and/or intra-abdominal sepsis; see sepsis below under General.
    -Viral: HIV infection by serologic or molecular detection; Rabies; Reactive Hepatitis B Surface Antigen; Retroviral infections including HTLV I/II; Viral Encephalitis or Meningitis; Active Herpes simplex, varicella zoster, or cytomegalovirus viremia or pneumonia; Acute Epstein Barr Virus (mononucleosis); West Nile Virus infection; SARS.
    -Fungal: Active infection with Cryptococcus, Aspergillus, Histoplasma, Coccidioides; Active candidemia or invasive yeast infection.
    -Parasites: Active infection with Trypanosoma cruzi (Chagas'), Leishmania, Strongyloides, or Malaria (Plasmodium sp.).
    - Prion: Creutzfeldt-Jacob Disease.
  • General [Exclusions to the Definition of Eligible] :
    -Aplastic Anemia; Agranulocytosis; Extreme Immaturity (<500 grams or gestational age of <32 weeks); Current malignant neoplasms except non-melanoma skin cancers such as basal cell and squamous cell cancer and primary CNS tumors without evident metastatic disease ; Previous malignant neoplasms with current evident metastatic disease; A history of melanoma; Hematologic malignancies - Leukemia, Hodgkin's Disease, Lymphoma, Multiple Myeloma; Multi-system organ failure (MSOF) due to overwhelming sepsis or MSOF without sepsis defined as 3 or more systems in simultaneous failure for a period of 24 hours or more without response to treatment or resuscitation; Active Fungal, Parasitic, Viral, or Bacterial Meningitis or encephalitis.

Emphysema

A Chronic Obstructive Pulmonary Disease (COPD) in which an abnormal accumulation of air in tissues or organs, especially of the lungs which results in air trapping within the lungs.

En Bloc (or En-Bloc)

The transplant of both kidneys or both lungs from a single donor into one recipient, where both organs are recovered and transplanted as a single unit.

Encephalopathy

Serious brain function abnormalities experienced by some patients with advanced liver disease (and other diseases). Symptoms most commonly include confusion, disorientation, insomnia, and may progress to a coma.

End-Stage Liver Disease (ESLD)

Irreversible liver failure that requires transplantation as hepatic replacement therapy.

End-Stage Organ Disease

A disease that leads to the permanent failure of an organ.

End-Stage Renal Disease (ESRD) Program

Part of the Medicare program that provides medical coverage to people with end stage kidney disease or renal failure to help pay for dialysis or transplantation.

Epidemiology

The study of incidence, distribution and control of disease in populations.

Epstein-Barr Virus (EBV)

A common virus that remains dormant in most people, but may be a problem in transplant recipients. It has been associated with certain cancers, including Burkitt's lymphoma, immunoblastic lymphoma, and nasopharyngeal carcinoma.

Ethics

Medical Ethics is the discipline of evaluating the merits, risks, and social concerns of activities in the field of medicine. Principles include:
  • A practitioner should act in the best interest of the patient (Salus aegroti suprema lex)
  • "First, do no harm" (primum non nocere), from the Hippocratic Oath
  • Autonomy – a patient’s right to choose or refuse treatment (Voluntas aegroti suprema lex)
  • Justice - concerns the distribution of scarce health resources, and the decision of who gets what treatment
  • Dignity - the patient (and the person treating the patient) have the right to dignity
  • Truthfulness - patients should not be lied to, and deserves to know the whole truth about their illness and treatment
Principles such as these do not give answers as to how to handle a particular situation, but guide doctors on what principles ought to apply to actual circumstances. See also Hippocratic Oath, Justice and Utility, Statement of Principles and Objectives of Equitable Organ Allocation.

Ethics Committee

The OPTN standing committee charged with considering ethical issues related to the process of organ procurement, distribution and transplantation. These issues include social impact, the relationship of cost to benefit, impact on patients and their families as well as society at large, legal issues and related public policy, and access to transplantation. The committee will consider the broader implications presented by such issues and will not consider individual patient's issues or disputes.

Ethnicity

For OPTN data purposes, the use of categories such as White; Black or African-American; Hispanic; Asian, American Indian/ Alaskan Native; Pacific Islander; Multiracial.

Evaluation Plan

The detailed document describing procedures related to how UNOS as the OPTN contractor assesses OPTN member compliance with OPTN policies and by-laws.

Executive Committee

The standing OPTN Committee composed of no more than 12 Directors: President, Immediate Past President, Vice President, Vice President of Patient and Donor Affairs, Secretary, Treasurer, and if not represented by the individuals holding such offices, at least one of each of the following: an organ procurement organization representative, a transplant coordinator representative, a histocompatibility representative, and a general public, patient or voluntary health organization representative. HRSA’s Director of the Division of Transplantation and the OPTN Project Officer or their designees participate ex officio. The UNOS Executive Director attends all meetings of the OPTN Executive Committee but does not vote. The Executive Committee meetings take place immediately prior to both Board of Directors meetings, and may also take place at other times as the need arises. It is authorized to:
  • Act conditionally on behalf of the Board
  • Review time-sensitive issues that require Board action, including the proposal of solutions to conflicts among recommendations of various standing and ad hoc committees
  • Make recommendations to the Board on any issue
  • Provide guidance on the interpretation of prior Board actions, and/or temporarily suspend or modify implementation of recent policy or by-law changes that are not achieving their intended effect

Expanded Criteria Donor (ECD) Kidney

A kidney donated for transplantation from any brain dead donor over the age of 60 years; or from a donor over the age of 50 years with two of the following: a history of hypertension, a terminal serum creatinine greater than or equal to 1.5 mg/dl, or death resulting from a cerebral vascular accident (stroke). This definition applies to the allocation of deceased donor kidneys.

Expanded Donor (ED)

A donor whose characteristics may include general or organ specific factors such as advanced donor age, prior infection with hepatitis B or hepatitis C, a history of hypertension or diabetes mellitus, abnormal donor organ function, or non-heartbeating status of a deceased donor. The term “expanded” is used because an expansion of the donor pool is considered to increase transplantation and is preferred over the term “marginal donor.”

Extra Corporeal Membrane Oxygenation (ECMO)

A system to augment alveolar ventilation by gaseous diffusion of oxygen into blood outside the patient’s body.

Extrarenal

Outside of, beyond the kidney.



F

Finance Committee

The OPTN standing committee chaired by the Treasurer. Primarily responsible for the organization's financial operations including approving the annual OPTN budget and recommending the OPTN member registration fee to the OPTN Board of Directors at the beginning of every fiscal year; meeting with the OPTN's compliance auditors annually to review the OMB Circular A-133 audit to ensure that UNOS is compliant with all OPTN contract and Federal regulation requirements; and monitoring OPTN member activity regarding timely payment of OPTN member registration invoices as well as the cash reserve levels of the OPTN.

First Person Consent Legislation

Legislation that allows donor designation to be indicated on a driver’s license or an official signed donor document, which gives hospitals legal authority to proceed with organ procurement without consent from the family.

First Things First

Breakthrough Collaborative term describing priorities addressed by successful teams to assure that change is deep enough into the system to be sustained:
  • Create OPO Hospital Presence/In House Coordinator
  • Analyze and Apply Current Hospital Specific Data
  • Identify Physician/Clinician Champions
  • Conduct Real Time Death Record Reviews
  • Establish Clinical Triggers
  • Hold Donation Team Huddles
  • Identify and Utilize Effective Requesters in Ever Case
  • Conduct After Action Reviews

Food and Drug Administration (FDA)

An agency within the Department of Health and Human Services responsible for protecting the public health by assuring the safety, efficacy, and security of human and veterinary drugs, biological products, medical devices, food supplies, cosmetics, and products that emit radiation. The FDA is also responsible for advancing the public health by helping to speed innovations that make medicines and foods more effective, safer, and more affordable; and helping the public get the accurate, science-based information they need to use medicines and foods to improve their health.

Forced Expiratory Volume in One Second (FEV1)

A standard measure of lung function which measures the volume of air one breathes out in one second after taking a deep breath. It is also a predictor of mortality in lung patients.

Forced Vital Capacity (FVC)

The maximum volume of gas that can be exhaled after taking a maximum inhalation. A measure of pulmonary function.

Freedom of Information Act (FOIA)

A federal law giving any person the right to obtain federal agency records unless the records (or part of the records) are protected from disclosure by any of the nine exemptions contained in the law.

Fulminant

A medical event that occurs very quickly with an acute onset, as in fulminant liver failure. Usually occurs over days and not weeks.

Fulminant Hepatic Failure (FHF)

Acute liver failure with no preexisting liver disease.

Fungal Disease

Infection that usualy occurs in patients during treatment with steroids or immunosuppressants. Examples of fungi include candidas, aspergillus and histoplasmosis, which tend to affect the whole body and are not localized infections.



G

Geographic units for organ distribution

Donated organs are first offered to transplant candidates within the Designated Service Area of the host OPO (with the exception of perfectly matched donor kidneys). If the organs are not acceptable for use in the transplant centers in the host OPO's DSA, they are offered transplant centers in the Region, then to all centers nationwide. DSA assignations are determined by CMS.

Glomerular Filtration Rate (GFR)

A measure used to determine kidney function, the GFR indicates the kidney's ability to filter and remove waste products.

Glomerulonephritis

A disease or condition resulting in inflammation of the filtering cells of the kidney.

Graft

A transplanted organ or tissue.

Graft Survival

The length of time an organ functions successfully after being transplanted.



H

Haplotype

A set of closely linked genes usually inherited together as a unit, observed to determine genetic compatibility between donor and recipient.

Health Care Financing Administration (HCFA)

See Centers for Medicare & Medicaid Services (CMS).

Health Insurance Portability and Accountability Act (HIPAA)

Passed in 1996, HIPAA requires employers to provide health insurance coverage to employees who lose or change jobs, and includes an administrative simplification section which deals with the standardization of healthcare-related information systems including data security, protection of patient confidentiality and privacy. The Act mandates standardized formats for all patient health, administrative, and financial data; unique identifiers (ID numbers) for each healthcare entity, including individuals, employers, health plans and health care providers; and security mechanisms to ensure confidentiality and data integrity for any information that identifies an individual.

Health Maintenance Organization (HMO)

An insurance plan encompassing a network of health care providers including doctors, hospitals, pharmacies, and other medical facilities and professionals where an individual and his/her employer pay a fixed monthly fee for services, regardless of the level of care.

Health Resources and Services Administration (HRSA)

The primary healthcare agency of the federal government that deals with health access issues. Its role is to make essential primary care service available to poor, uninsured and geographically underserved populations. HRSA is a division of the U.S. Department of Health and Human Services (HHS), and oversee the Office of Special Programs, which in turn provides oversight to the Division of Transplantation (DoT). HRSA provides funding for the OPTN contract.

Hematocrit (Hct)

The measure of the volume of red blood cells as percentage of the total blood volume. Normal in males is 43 to 49 percent, in females 37 to 43 percent.

Hemodialysis

A treatment for kidney failure where the patient's blood is passed through a filtering membrane to remove excess fluid and wastes.

Hemoglobin (Hgb)

The protein in red blood cells that carries oxygen.

Hepatic

Having to do with, or referring to, the liver.

Hepatic Encephalopathy

Associated with hepatic failure from any cause, attributed to the passage of toxic nitrogenous substances from the portal to the systemic circulation; cerebral manifestations may include coma.

Hepatitis

A viral infection or non-specific inflammation of the liver that can lead to liver failure. Hepatitis C is the leading cause of liver failure that leads to transplantation.

Hepatitis B Virus (HBV)

Formerly called serum hepatitis, it is caused by the hepatitis B virus (HBV). About 10 percent of cases progress to chronic hepatitis. It is spread through intravenous drug use, through sexual contact with infected individuals, through exposure to infected body fluids, and vertically from mother to child. Common symptoms include abdominal pain, fatigue, fever, jaundice, and elevated liver enzymes. A vaccine against HBV is available.

Hepatitis C Virus (HCV)

A form of hepatitis caused by the hepatitis C virus (HCV), previously known as non-A, non-B hepatitis. Most infections are due to injection drug use with contaminated needles. Blood transfusion-associated infections are rarer now than in the past due to improved blood donor screening. The CDC estimates 4.1 million (1.6 percent) Americans have been infected with HCV, of whom 3.2 million are chronically infected. Of the people who have chronic hepatitis C, 10 to 20 percent eventually develop cirrhosis and one to five percent develop hepatocellular carcinoma.

Hepatologist

A specialist who is an expert in the diagnosis and treatment of liver diseases.

Heterotopic Transplant

Transplantation of an organ to a site different from where it would ordinarily be located on the recipient's body.

High Blood Pressure (hypertension) (HTN)

When the force of the blood pushing against the walls of the blood vessels is higher than normal because the blood vessels have either become less elastic or have gotten smaller. High blood pressure causes the heart to pump harder to move blood through the body. High blood pressure can cause kidney failure and heart disease if not treated.

High Leverage Changes

Breakthrough Collaborative term. Improvements which have a direct relationship to outcomes/results and are a combination of change package concepts. Example: Six actions to create a high performance, organ donation system:
  1. Advocate Organ Donation As The Mission
  2. Involve Senior Leadership To Get Results
  3. Deploy A Self-Organizing OPO/Hospital Team
  4. Practice Early Referral, Rapid Response
  5. Master Effective Requesting
  6. Implement Donation After Cardiac Death

Hippocratic Oath

A traditional oath of physicians, who pledge to practice medicine according to the ideals and moral principles put forth by Hippocrates: to treat the ill to the best of one's ability, to preserve a patient's privacy, to teach the secrets of medicine to the next generation. Ethics, Justice, Statement of Principles and Objectives of Equitable Organ Allocation, Utility.

Histocompatibility

The examination of human leukocyte antigens (HLA) in a patient, often referred to as "tissue typing" or "genetic matching." Tissue typing is routinely performed for all donors and recipients in kidney and pancreas transplantation to help match the donor with the most suitable recipients to help decrease the likelihood of rejecting the transplanted organ. See Human Leukocyte Antigen System (HLA System).

Histocompatibility Antigens

Molecules, also known as Human Leukocyte Antigens (HLA), found on all nucleated cells in the body. Inherited from one' parents, histocompatibility antigens help the immune system to recognize whether or not a cell is foreign to the body. These antigens are used to help determine the compatibility of kidneys and pancreata for transplantation from one individual to another. See Human Leukocyte Antigen System (HLA System).

Histocompatibility Committee

The standing OPTN committee charged with considering issues relating to donor and recipient histocompatibility, organ alocation, tissue typing consistency and histocompatibility laboratory qualifications, including cost to benefit ratio and impact on organ transplantation. The committee will consider the broad implications of such issues and will deal with specific individual issues or situations.

HLA Mismatch (MM)

In transplantation, a mismatch indicates the donor has at least one HLA-A, HLA-B, or HLA-DR antigen that is not present in the recipient.

Host OPO

The OPO that identifies a potential donor and assumes responsibility for donor management, procurement and organ allocation.

Huddle

Breakthrough Collaborative term. A structured multi-disciplinary meeting of hospital and OPO staff used to coordinate the Effective Request Process and to meet the unique needs of each eligible donor’s family.

Human Immunodeficiency Virus (HIV)

The virus destroys cells in the immune system, which makes it difficult for the body to fight off infections; toxins, or poisons; and diseases. HIV causes AIDS, a late stage of the virus characterized by serious infections, malignancies and neurologic dysfunctions.

Human Leukocyte Antigen (HLA)

Molecules found on cells in the body that are inherited genetically. In donor-recipient matching, HLAs help to determine compatibility between a donor and recipients.

Human Leukocyte Antigen System (HLA System)

The system for using HLAs help to determine the compatibility of kidneys and pancreata for transplantation from one individual to another. Generally speaking, the smaller the number of HLA mismatches the better the compatibility between donor organ and recipient.

Hypertension

High blood pressure. Occurs when the force of the blood pushing against the walls of the blood vessels is higher than normal because the blood vessels have either become less elastic or have gotten smaller. Hypertension causes the heart to pump harder to move blood through the body. It can cause kidney failure and heart disease if not treated.



I

Idiopathic

Of unknown cause.

Idiopathic cardiomyopathy

Disease of the heart muscle with no known cause leading to a weakened and often enlarged heart; one of the principal reasons for heart transplantation.

Idiopathic pulmonary fibrosis

A chronic progressive interstitial lung disease of unknown cause, characterized by inflammation and fibrosis of the lung parenchyma.

Immune Response

The body's natural defense against foreign objects or organisms, such as bacteria, viruses or transplanted organs or tissue.

Immune System

The organs, tissues, cells and cell products in your body that work to find and neutralize foreign substances including bacteria, viruses and transplanted organs.

Immunogenicity

A measure of an antigen's ability to provoke an immune response.

Immunosuppression

Prevention or inhibition of the immune system to respond to foreign substances in the body. Medications often used to prevent a recipient's immune system from rejecting a transplanted organ or tissue include prednisone, methylprednisolone, azathioprine, mycophenolate mofetil, cyclosporine, tacrolimus, and sirolimus, among others.

Immunosuppressive

Relating to the weakening or reducing of your immune system's responses to foreign material; immunosuppressive drugs reduce your immune system's ability to reject a transplanted organ.

Import Match Run

Generated from access to a non-local donor, an import match run is a local record of an OPO's potential recipients for a particular organ (listed in the order which local allocation offers should be made). The potential recipients are sorted according to the relationship between distinct candidate and donor information.

Improvement Leader

Breakthrough Collaborative term. The Improvement Leader organizes and drives the spread project in their donation service area.

Induction Therapy

Medications given for a short finite period in the perioperative period for the purpose of preventing acute rejection. Though the drugs may be continued after discharge for the first 30 days after transplant, it will not be used long-term for immunosuppressive maintenance.

Infection

A condition that occurs when a foreign substance, such as bacteria, enters your body, causing your immune system to fight the intruder. All transplant recipients can get infections more easily because their immune systems are suppressed. It is more difficult for them to recover from infection (such as urinary tract infections, colds and the flu).

Inflammation

The swelling, heat and redness produced when the body is injured or infected.

Informed Consent

A person's voluntary agreement, based upon adequate knowledge and understanding of relevant information, to participate in research or to undergo a diagnostic, therapeutic, or preventive procedure.

Innovator

In the improvement process, the person(s) who goes outside the organization to find new ideas. This person may not be well connected to others in the social system. [Rogers E. Diffusion of Innovations. 4th ed. New York, N.Y.: The Free Press; 1995. Note: Importance of change agents; agenda setting in organizations]

Inotropes

Medications that increase the force of contraction of the heart muscle.

Institutional Review Board (IRB)

A committee of physicians, statisticians, researchers, community advocates, and others that ensures that a clinical trial is ethical and that the rights of study participants are protected.

Intended Candidate

The candidate for whom an organ was accepted.

International Normalized Ratio (INR)

A measure of a patient’s coagulation (clotting) system. INR is used in the MELD and PELD calculations.

International Organization for Standardization (ISO)

A non-governmental non-profit organization whose mission is to promote the development of standardization and related activities in the world with a view to facilitating the international exchange of goods and services, and to developing cooperation in the spheres of intellectual, scientific, technological and economic activity.

International Society for Heart and Lung Transplantation (ISHLT)

An international not-for-profit organization dedicated to the advancement of the science and treatment of end-stage heart and lung diseases, comprising more than 2,200 professionals, ISHLT is an OPTN member in the Medical Professional/Scientific Organization category.

Investigational

A drug or procedure that is not yet Federal Drug Administration (FDA) approved for marketing.

ISO 9001:2000

The quality standards certification obtained by UNOS from the International Organization for Standardization (ISO) to ensure optimal quality of all information technology activities and processes including Organ Center practices, user training and support services, and al processes associated data collection, validation, monitoring and reporting, policy implementation. See International Organization for Standardization.



J

Joint Commission on Accreditation of Healthcare Organizations (JCAHO)

An independent, nonprofit organization that evaluates and accredits health care organizations and programs in the United States including hospitals, nursing homes and home health agencies. The commission establishes guidelines for the operation of hospitals and other health facilities and conducts survey and accreditation programs.



K

Kidney Allocation Review Subcommittee (KARS)

A subcommittee of the Kidney/Pancreas Allocation Committee, created in 2004 to conduct a comprehensive review of the national system for allocating deceased donor kidneys, including a series of public hearings with expert testimony and open discussion focused on specific aspects of the national kidney allocation system and opportunities for assessment and/or improvement.

Kidney and Pancreas Simulated Allocation Model (KPSAM)

A computer model that simulates the OPTN kidney and kidney-pancreas allocation systems for the assessment of the impact of various kidney policies.

Kidney Transplantation Committee

The standing OPTN committee charged with considering medical, scientific and ethical aspects related to kidney procurement, allocation and sharing. The committee considers both the broad implications and the specific member situations relating to kidney issues and policies.

Kidneys

A pair of organs that remove wastes from the body through the production of urine. All of the blood in the body passes through the kidneys about 20 times every hour. Kidneys can be donated from living and deceased donors and transplanted into patients with kidney failure.



L

Learning Session

Breakthrough Collaborative term. An intensive two day meeting designed to focus on a set of key components to support effective spread, build learning relationships with other day-to-day spread agents, and support participants in making plans for their organization’s spread work.

Left Ventricular Assist Device (LVAD)

A mechanical device implanted into a patient with left heart failure that assists the left ventricle in providing blood circulation.

Legislation

A law or group of laws proposed or enacted that have the force or authority of a state or Federal government, or other organization. For transplant-related legislation, see Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA), OPTN Final Rule, First Person Consent Legislation, Health Insurance Portability and Accountability Act (HIPAA), National Organ Transplant Act (NOTA), Uniform Anatomical Gift Act, Uniform Brain Death Act, Uniform Determination of Death Act.

Leukocyte

A white blood cell.

Life-years

For a particular population, the total number of years lived. For example, suppose 10 transplant recipients each lived 30 years following the transplant. As a group, these recipients would have lived 300 life-years.

Liver

The largest organ in the body, made up of a spongy mass of wedge-shaped lobes. The liver secretes bile, which aids in digestion, helps process proteins, carbohydrates, and fats, and stores substances like vitamins. It also removes wastes from the blood. A living donor can give part of their liver, after which the liver will regenerate itself in both the donor and recipient.

Liver and Intestinal Organ Transplantation Committee

The standing OPTN committee charged with considering medical, scientific and ethical aspects related or liver/intestine organ procurement, allocation and sharing. The committee will consider broad implications and specific situations among members.

Liver Simulated Allocation Model (LSAM)

A computer model that simulates various OPTN liver allocation system alternatives for the assessment of the impact of various liver policies.

Living Donation

When a living person gives an organ or a portion of an organ for use in a transplant. A kidney, or portion of a liver, lung, pancreas or intestine may be donated. See also Living Donor, Organ Donation.

Living Donor (LD)

A living person who donates an organ for transplantation, such as a kidney or a segment of the lung, liver, pancreas, or intestine. Living donors may be blood relatives, emotionally related individuals, or altruistic strangers. These may also include domino heart or liver transplants. See Domino Transplant.

Living Donor Committee

A permanent standing OPTN committee responsible for considering issues relating to the donation and transplantation of organs from living donors to recipients. The committee makes recommendations to improve the process of living donation and transplantation.

Living Donor Follow-up Form (LDF)

The form submitted by the transplant center at six-months and one year post-donation, containing a living donor's status, clinical measures and complications.

Living Donor Registration Form (LDR)

The form submitted by the transplant center containing living donor demographics, pre-donation clinical measures, surgical information, post-operative information and complications and post-operative clinical measures.

Living-Related Donor (LRD)

A family member who donates a kidney, part of a lung, liver or pancreas to another family member. Examples: a brother and a sister, or a parent and a child.

Living-Unrelated Donor

A person who is not related by blood, who donates a kidney, part of a lung, liver or pancreas to another person (such as a husband, wife, friend or in-law. In the last few years, stranger-to-stranger living unrelated donations have greatly increased).

Local Unit

The geographic area for organ procurement and distribution, usually the OPO's Designated Service Area. See also Alternative Local Units (ALUs), Donation Service Area (DSA), Geographic units for organ distribution.

Lost to Follow-up

A recipient who does not return to the transplant center for medical maintenance after the transplant procedure, or for whom posttransplant information is unavailable.

Lung Allocation Score (LAS)

In the OPTN lung allocation system, every lung transplant candidate age 12 and older receives a lung allocation score, which, combined with blood type, and the geographic distance between the candidates and the hospital where the lung donor is located, is used to determine priority for receiving a lung transplant when a donor lung becomes available. Lungs from pediatric and adolescent donors are offered first to pediatric and adolescent transplant candidates before they are offered to adults. The following medical information is used to calculate a lung allocation score from 0 to 100 for each transplant candidate:
  • Forced Vital Capacity
  • Pulmonary Artery Pressure
  • Oxygen at rest
  • Age
  • Body Mass Index
  • Diabetes
  • NYHA Functional Classification
  • 6-minute walk distance
  • Assisted ventilation
  • Pulmonary Capillary Wedge Pressure
  • Serum Creatinine
  • Disease Diagnosis

Lung Review Board (LRB)

A national peer review panel established to review estimated clinical values, diagnosis, and exceptional scores submitted by listing centers on behalf of lung transplant candidates.

Lungs

The organs of respiration in which aeration of the blood takes place, consisting of a right and left lung divided into lobes. The right lung has three lobes and the left lung has two lobes.



M

Malignancy

A cancer, neoplasm or tumor that grows in an uncontrolled manner, invading nearby tissue and metastasizing (spreading) to other sites through the bloodstream.

Marginal donor

See Expanded Donor.

Match

The compatibility between the donor and the recipient. The more appropriate the match, the greater the chance of a successful transplant.

Match Run

A computerized ranking of transplant candidates based upon donor and candidate medical compatibility and criteria defined in OPTN policies.

Match System

The computerized algorithm used to prioritize patients waiting for organs. It eliminates potential recipients whose size or ABO type is incompatible with that of a donor and then ranks those remaining potential recipients according to the ranking system approved by the OPTN Board.

Medicaid

A partnership between the Federal government and the individual states to share the cost of providing medical coverage for recipients of welfare programs and allowing states to provide the same coverage to low-income workers not eligible for welfare. Programs vary greatly from state to state.

Medicare

The program of the Federal government that provides hospital and medical insurance, through social security taxes, to people age 65 and over, those who have permanent kidney failure and certain people with disabilities.

Medication Administration Record (MAR)

A history of drug therapy provided to a patient.

Membership and Professional Standards Committee (MPSC)

The standing OPTN committee charged with insuring that OPTN members meet and remain in compliance with OPTN Criteria for Institutional Membership. The MPSC develops, modifies and makes recommendations to the board regarding criteria for institution membership and each class of membership to the Board, reviews membership applications and adopts recommendations to be presented to the Board; monitors members for compliance with membership criteria and policies including transplant center outcomes and activity levels and reviews reported policy violations and makes recommendations to the Board.

Minority Affairs Committee (MAC)

The standing OPTN committee charged with identifying issues which impact organ procurement, allocation and transplantation of minorities. As necessary, the committee conducts research related to specific issues under consideration. The committee provides input and recommendations to the Board of Directors to ensure that issues and needs particular to minority populations are met.

Mismatch (MM)

In kidney transplantation, a mismatch indicates the donor has at least one HLA-A, HLA-B, or HLA-DR antigen that is not present in the recipient.

Model for End-Stage Liver Disease (MELD)

The scoring system used to measure illness severity in liver transplant candidates. This system is used in the allocation of livers to adults, established in February 2002. The MELD system uses three laboratory values (bilirubin, creatinine and INR) to calculate a score that is predictive of the risk of death within three months on the liver waiting list. Livers are allocated to waitlisted patients with chronic liver disease based upon this score. See Pediatric End Stage Liver Disease (PELD) Scoring System.

Model for Improvement

An approach to process improvement, developed by Associates in Process Improvement, which helps teams accelerate the adoption of proven and effective changes. See also Plan-Do-Study-Act.

Morbidity

A disease state or the incidence or frequency of a disease among a population.

Multiple Listing

Being on the waiting list for the same organ at more than one transplant center.



N

National Kidney Foundation (NKF)

A non-profit national organization whose mission is to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases and increase the availability of all organs for transplantation. NKF is an OPTN member in the Voluntary Health Organization category.

National Organ Transplant Act (NOTA)

The National Organ Transplant Act (1984 Public Law 98-507), approved October 19, 1984 and amended in 1988 and 1990, outlawed the sale of human organs and provided for the establishment of the Task Force on Organ Transplantation; authorized the Secretary of HHS to make grants for the planning, establishment, and initial operation of qualified OPOs; and established the formation of the Organ Procurement and Transplantation Network (OPTN) and Scientific Registry of Transplant Recipients (SRTR).

Nephrologist

A specialist in the treatment of kidney insufficiency and kidney disease.

New York Heart Association Functional Classification (NYHA)

An assessment of a patient’s heart failure based on the severity of symptoms. Range is Class I-IV.

Non-Function

A condition in which a transplanted organ fails to function after being transplanted into a recipient, meaning that the recipient will either have to start dialysis or undergo another transplant. Non-function is rare (less than two percent of all kidney transplants) but is more common in liver transplants.

Non-heartbeating Donor (NHBD)

See Donation after Cardiac Death.

Noncompliance

1) Failure of patients to follow the instructions of the medical team, 2) Failure of OPTN members to adhere to the policies and bylaws of the OPTN.

North American Transplant Coordinators Organization (NATCO)

A non-profit membership organization for transplant and procurement clinicians worldwide. NATCO is an OPTN member in the Medical Professional/Scientific Organization category whose president also serves on the OPTN Board of Directors.



O

Omnibus Budget Reconciliation Act (OBRA)

The federal law that allows an employee to continue health insurance benefits after COBRA, if he/she has elected COBRA coverage due to a Social Security approved disability. OBRA is an 11 month extension of COBRA. OBRA also established hospital procedures that require a designated person to approach family members about donation at the time of a patient's death. This practice is referred to as Routine Request. In 1987, OBRA was revised to require hospitals to notify OPOs regarding potential donors. See Consolidated Omnibus Budget Reconciliation Act (COBRA).

Operations Committee

The standing OPTN committee formed in July, 2003 to systematically ensure that OPTN policies and systems provide for efficient, effective and measurable organ allocation and distribution, with the aims of a) increasing the utility of donated organs, b) providing for the health and safety of transplant patients while c) instilling public trust in the national transplant system.

OPTN Computer Registration Fee

A fee paid by OPTN members at the time a patient is registered on the organ transplant waiting list or receives a living donor transplant. The fee amount is calculated annually, based upon projected OPTN operating expenses and projected patient registration volume for the year ahead. It is calculated by the OPTN Finance Committee, forwarded to the Board of Directors for approval and given final approval by HRSA.

OPTN Final Rule

The Final Rule (42 CFR Part 121) effective March 16, 2000, further defines the terms and conditions for operation of the OPTN. The Final Rule defines a standard framework for policies, requiring the OPTN to establish Policy Criteria, Policy Objectives and Performance Measures with procedures for continuous evaluation and reporting. Under the terms of the Final Rule, policies intended to be binding upon OPTN members are developed through the OPTN committees and Board of Directors and then submitted to the Secretary of HHS for final approval. The Rule also states that a transplant center must remain a member in good standing. If the member remains non-compliant after due process by the OPTN Membership and Standards Committee, the Board may deem a non-compliant center a Member Not in Good Standing. The case may then be forwarded for review to the Secretary, who could ultimately revoke that center’s eligibility to participate in Medicare.

OPTN Membership

There are five categories of membership to the OPTN:
  • Institutional Members: Organ Procurement Organizations, Transplant Centers and Histocompatibility Laboratories. Required by law. Membership term: indefinite.
  • Medical/ Scientific Members: Professional Scientific or Medical Organizations or Institutions whose membership includes those involved in organ transplantation. Membership term: two years.
  • Public Organization Members: Organizations or institutions engaged in organ donation activities or representing or providing direct support or services to transplant recipients, transplant candidates, or their families; or hospitals that have an interest in the fields of organ donation or transplantation, defined by the referral of at least one potential organ or tissue donor per year for donation. Membership term: two years.
  • Business Members: established organizations or institutions with an interest in the fields of organ donation or transplantation, engaging in commercial activities with two or more active Institutional Members. Membership term: two years.
  • Individual Members: a person with an interest and/or expertise in the fields of organ donation or transplantation. Membership term: two years.
For further details on membership categories and the criteria that must be met to qualify, see Sections 1.1-1.8 of the OPTN Bylaws.

Organ

A part of the body made up of tissues and cells that enable it to perform a particular function. Transplantable organs are the heart, liver, lungs, kidneys, pancreas and intestines.

Organ Availability Committee (OAC)

The standing OPTN committee charged with considering issues relating to organ procurement, investi- gating and recommending the approval of new organ preservation and shipment techniques, establishing practices to increase the supply of donated organs, and educating public and professional audiences about the need to increase donation.

Organ Center (OC)

The Organ Center within UNOS responsible for facilitating organ sharing among transplant centers, organ procurement organizations and histocompatibility laboratories across the U.S. The primary functions of the Organ Center are to: assist in placing donated organs for transplantation, assist organ procurement organizations with running the donor/recipient computer matching process, assist with transportation of organs and associated tissues for the purposes of transplantation, act as a resource to the transplant community regarding organ sharing policies. The Organ Center operates 24 hours a day, 365 days a year.

Organ Center Staff

The Organ Center staff consists of 18 full time Organ Placement Specialists, two Organ Center Managers, and a four- person Quality Management Team. The Organ Center day is divided into two 12-hour shifts, and is typically staffed with three Organ Placement Specialists per shift with one Specialist on-call. Additionally, an Organ Center Manager is always available to assist with complex administrative, operational, or policy issues. The Organ Center employs individuals of varied educational backgrounds and employment experiences; however a bachelor's degree is required with a preferred concentration in healthcare or science. Several of the staff have advanced degrees and most have previous clinical experience.

Organ Donation and Recovery Improvement Act

Passed by Congress in 2004, the Organ Donation and Recovery Improvement Act established programs to increase organ donation through public awareness campaigns and education projects, and provided grants programs for individual States supporting use of hospital-based organ procurement coordinators, research and demonstration projects, and reimbursement to living donors for travel related expenses.

Organ Donation Breakthrough Collaborative

The HRSA program launched in 2003 as part of the HHS' Gift of Life Donation Initiative, to 1) identify and promote the best practices in organ donation and procurement for hospitals and OPOs achieving the highest donation rates in the country, and 2) raise the overall donor consent rate to 75 percent among participating hospitals and OPOs. An increase in deceased donors by 4.3 percent occurred from 2002 to 2003 with the donor consents increasing by five percent. The model for the Breakthrough Collaborative was based upon the best-practice strategies developed by HRSA and the Institute for Healthcare Improvement.

The Department of Health and Human Services joined with key national leaders and practitioners from the Nation's transplantation and hospital communities in April 2003 to launch the Organ Donation Breakthrough Collaborative. The Collaborative is intended to dramatically increase access to transplantable organs. The purpose of this initiative is clear, measurable, ambitious, and achievable: Committed to saving or enhancing thousands of lives a year by spreading known best practices to the nation's largest hospitals to achieve organ donation rates of 75 percent or higher in these hospitals.

Organ Donation

To give an organ or a part of an organ to be transplanted into another person. Organ donation can occur with a deceased donor, who can give kidneys, pancreas, liver, lungs, heart, intestinal organs, and with a live donor, who can give a kidney, or a portion of the liver, lung, or intestine.

Organ Placement Process

When organs are donated, the host OPO accesses the national transplant computer system through the Internet, or contacts the Organ Center at UNOS. Information about the donor is entered into the system and a donor/recipient match is run for each donated organ. The resulting match list of potential recipients is ranked according to criteria defined in that organ’s allocation policy (i.e. blood type, tissue type, size of the organ, medical urgency of the patient as well as time already spent on the waiting list and distance between donor and recipient). Each organ has its own specific criteria.

Using the match list of potential recipients, the host OPO’s organ procurement coordinator or the Organ Placement Specialist in the Organ Center contacts the transplant center of the highest ranked patient, based on policy criteria, to be offered the organ. If the organ is turned down, the next potential recipient's transplant center on the match list is contacted until the organ is placed. Once the organ is accepted for a patient, transportation arrangements are made and transplant surgery is scheduled. See also, Wait List, Wait List Registration, Waiting Time.

Organ Placement Specialist

Organ Center personnel responsible for coordinating the organ matching process among OPTN members.

Organ Preservation

Methods used to preserve organs while they are out of the body, between procurement from a donor and transplantation into a recipient.

Organ Procurement

The removal or retrieval of organs from a donor for transplantation.

Organ Procurement and Transplantation Network (OPTN)

In 1987, Congress passed the National Organ Transplant Act that mandated the establishment of the OPTN and Scientific Registry of Transplant Recipients. The purpose of the OPTN is to improve the effectiveness of the nation's organ procurement, donation and transplantation system by increasing the availability of and access to donor organs for patients with end-stage organ failure. The Act stipulated that the Network be a non-profit, private sector entity comprised of all U.S. transplant centers, organ procurement organizations and histocompatibility laboratories. These members along with professional and voluntary healthcare organizations and the representatives of the general public are governed by a Board of Directors which reports to the Division of Transplantation, HRSA and ultimately HHS. UNOS holds the OPTN contract.

Organ Procurement Organization (OPO)

An organization designated by the Centers for Medicare and Medicaid Services (CMS) and responsible for the procurement of organs for transplantation and the promotion of organ donation. OPOs serve as the vital link between the donor and recipient and are responsible for the identification of donors, and the retrieval, preservation and transportation of organs for transplantation. They are also involved in data folow-up regarding deceased organ donors. As a resource to the community OPOs engage in public educationon the critical need for organ donation. See also Donation Service Area (DSA).

Organ Procurement Organization Committee

The standing OPTN committee charged with considering issues relating to organ procurement organizations and increasing organ procurement efficiency and effectiveness to include medical, scientific and ethical aspects. The committee provides input to other OPTN committees as wel as to the OPTN Board of Directors. As necessary, the committee conducts research related to specific issues under consideration.

Organ Transplant Breakthrough Collaborative (OTBC)

An extension of the ODBC, the focus is to increase organ utilization. Specifically, the aim of this collaborative is to increase the mean number of recipients transplanted per donor from 3.06 (2004 U.S. mean) to 3.75 or higher. Success in this initiative is wholly dependent on the active participation of three estates: Transplant Programs, Donor Hospitals, and Organ Procurement Organizations.



P

Pancreas

Irregularly shaped gland that lies behind the stomach and secretes pancreatic enzymes into the small intestines to aid in the digestion of proteins, carbohydrates and fats. Islet cells within the pancreas secrete glucagon, which regulates blood sugar levels and insulin, which lowers blood sugar levels. If the pancreas fails, the individual becomes diabetic, and may need to take insulin. The pancreas can be donated and transplanted.

Pancreas Transplant Alone (PTA)

A type of isolated pancreas transplantation.

Pancreas Transplantation Committee

The standing OPTN committee charged with considering medical, scientific and ethical aspects related to pancreas procurement, allocation and sharing. The committee considers both the broad implications and the specific member situations relating to pancreas issues and policies.

Panel Reactive Antibody (PRA)

The percent PRA value is a measure of a patient’s level of sensitization to HLA antigens. It is the percentage of cells from a panel of blood donors against which a potential recipient’s serum reacts. The PRA reflects the percentage of the general population that a potential recipient makes antibodies (is sensitized) against. For example, a patient with a PRA of 80 percent will be incompatible with 80 percent of potential donors. Kidney patients with a high PRA are given priority on the waiting list. The h