Preface for OPTN/SRTR 2019 Annual Data Report

This Annual Data Report of the US Organ Procurement and Transplantation Network (OPTN) and the Scientific Registry of Transplant Recipients (SRTR) is the 29th annual report and is based on data pertaining to the period 2008-2019. The title OPTN/SRTR 2019 Annual Data Report reflects the fact that the report covers the most recent complete year of transplants, those performed in 2019.

This publication was developed for the US Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, by the SRTR contractor, the Hennepin Healthcare Research Institute (HHRI), and the OPTN contractor, United Network for Organ Sharing (UNOS), under former SRTR contract HHSH25020150009C, current SRTR contract 75R60220C00011, and OPTN contract 234-2005-37011C.

As the SRTR contractor, HHRI, through its Chronic Disease Research Group (CDRG), determined which data to present, conducted the required analyses, created the figures and tables, and drafted the text. As the OPTN contractor, UNOS reviewed the draft report and contributed to the content. This report is available at http://srtr.transplant.hrsa.gov. Individual chapters, as well as the report as a whole, may be downloaded.

Overview and Highlights

This Annual Data Report includes chapters on kidney, pancreas, liver, intestine, heart, and lung transplants, as well as chapters on deceased organ donation and economics. The organ-specific chapters include information on such topics as the waiting list, deceased donor organ donation, living donor organ donation, transplant, outcomes, and pediatric transplant. When possible, similar data and formats are used for each chapter. However, this is not always possible because some data are not pertinent to all organs.

Graphical presentation of the data is emphasized: more than 600 figures, tables, and maps are included in the chapters. They may be copied and pasted from the HTML files into slides.

Maps in this report present data divided into quintiles. Below is a sample map.

In this example, approximately one-fifth of all data points have a value of 74.9 or above. Ranges include the number at the lower end of the range and exclude that at the upper end (e.g., the second range here is 49.4 to < 58.6). Numbers in the first and last boxes are the minimum and maximum of observed data.

Maps by donation service area (DSA) use DSA boundaries in effect at the end of 2019. Some DSAs include non-contiguous areas. If a DSA has no transplant program for a given organ or no listings during the map's time frame, it is labeled ''No data'' on the map and shaded accordingly.

Milesone Dates in the Production of This Report

Data were cut: June 2020.
Data were analyzed: July 2020.

Methods

PRA and CPRA

For recipients of kidney and pancreas transplants performed on January 1, 2010 or later, panel-reactive antibody (PRA) at the time of transplant is the calculated PRA (cPRA) value. Prior to 2010, PRA was differentially available as cPRA and peak historical PRA. We chose to exclude 2008 and 2010 data from the graphs rather than use differently ascertained measures.

For liver, intestine, heart, and lung transplant recipients, PRA at the time of transplant is the value of the most recently recorded PRA. If that value is missing, we use the peak historical PRA value known at the time of transplant.

Heart status groups

On October 18, 2018, adult candidates were allocated hearts based on status groups 1-6. Status 1 candidates have the highest waitlist mortality risk and status 6 the lowest. Prior to that date, candidates were allocated hearts based on status groups 1A (highest priority), 1B, and 2. Because the ADR data are reported annually, for the last 10 weeks of 2018 we converted new status groups 1-6 to old status groups 1A, 1B, and 2, according to the table below. Some former status 2 candidates have been converted to new status 4 if they met all criteria, but most current status 4 candidates would have been status 1B under the old system. For 2019, waitlist and recipient distributions by status groups 1-6 are given in separate figures.

Table. The conversion table of allocation status under the new heart allocation system to the old allocation system.

Adult status group, 10/18/2018-12-31-2020	Adult status group prior to 10/18/2018
1	1A
2	1A
3	1A
4	1B
5	B
6	B

Incidence

Cumulative incidence of posttransplant outcomes (diabetes, posttransplant lymphoproliferative disorder, and acute rejection) are computed using survival methods.

Graft failure

Unless otherwise specified, ''graft failure'' refers to graft failure from any cause, including death and retransplant. For kidney failure, this also includes return to maintenance dialysis. ''Graft survival'' similarly refers to the absence of all-cause graft failure.

Patient survival

Posttransplant patient survival is not censored at graft failure. Thus, patient survival includes follow-up after graft failure, re-transplant, and return to maintenance dialysis in the case of kidney recipients.

Alive with function

Alive with function For a given year and organ type, counts of recipients alive with function include all recipients of that organ who underwent transplant prior to June 30 of the given year and who have no evidence of graft loss or death. Multi-organ recipients are counted once per organ. A heart-lung recipient, for example, is included in the counts of heart recipients and lung recipients alive with function. A kidney-alone recipient who underwent transplant in January 2001 and lost graft function in November 2010 is counted as alive with function in 2008, 2009, and 2010. Recipients who are lost to follow-up are assumed to be alive with a functioning graft until evidence, usually a death date, contradicts this assumption.

Transplant rates

In contrast to previous years, transplant rates include all waiting time (i.e., active and inactive) in the interval described.

Pretransplant mortality

Pretransplant mortality rates include all waiting time, and patients are followed until the earliest date of transplant, death, transfer to another program, removal from the waiting list due to improved condition, or cohort censor date. Because we continue to follow candidates for death outcomes beyond removal (except removal due to improved condition), we do not include removal due to deteriorated condition as part of a combined outcome.

Rates by subgroup

When rates are shown by subgroup (i.e., sex, race, or primary cause of disease), the numerator and denominator are computed exclusively within those groups. For example, for pretransplant mortality by race group, the numerator for each race group is the number of deaths in that race group during the interval described. The denominator is the total waiting time within each race group in that same time interval. When a characteristic is subject to change over time (e.g., MELD, PRA), it is assessed at the later of January 1 of the year or the listing date, and a candidate contributes waiting time and outcome only at that level. For example, age is assessed only once a year; therefore, a candidate contributes all of his or her waiting time to a single age category in a given yearly rate calculation but may change age categories over time. For example, a waitlisted candidate who was 34 years old on January 1, 2012 would be included in the 18-34 year age group in 2012, but if that candidate was still listed in 2014, he or she would be included in the 35-49 year age group.

Donor Risk Index

The kidney donor risk index (KDRI) and pancreas donor risk index (PDRI) are measures of donor quality based on donor factors.

KDRI¹=exp{-0.0194 x [if age < 18yrs] x [age - 18yrs] + 0.0128 x [age - 40yrs] + 0.0107 x [if age > 50yrs] x [age - 50yrs] + 0.179 x [if African-American] + 0.126 x [if hypertensive] + 0.130 x [if diabetic] + 0.220 x [serum creatitine -1mg/dL] - 0.209 x [if serum creatinine > 1.5mg/dL] x [serum creatinine - 1.5mg/dL] + 0.0881 x [if cause of death = cerebrovascular accident] - 0.0464 x [(height - 170cm)/10] - 0.0199 x [if weight < 80 kg] x [(weight-80kg)/5] + 0.133 x [if DCD] + 0.240 x [if HCV+]}

PDRI²=exp{-0.1379 x [if female] - 0.03446 x [if age < 20yrs] x [age - 20yrs] + 0.02615 x [age - 28yrs] + 0.1949 x [if creatinine > 2.5mg/dL] + 0.2395 x [if African-American race] + 0.1571 x [if Asian race] - 0.0009863 x [BMI - 24] + 0.03327 x [if BMI > 25] x [BMI - 25] - 0.006074 x [height - 173cm] + 0.3317 x [if DCD] + 0.2102 x [if cause of death = cerebrovascular accident]}

Complete versions of these indices also include transplant factors, but the donor-specific indices we show in this report are limited to donor-specific factors. To convert the KDRI to a cumulative percentage scale (i.e., the KDPI), we used a reference population of all deceased donor kidneys recovered for transplant in the United States in 2018. Kidneys recovered en bloc were counted once.

¹Rao PS, Schaubel DE, Guidinger MK, Andreoni KA, Wolfe RA, Merion RM, Port FK, Sung RS. A comprehensive risk quantification score for deceased donor kidneys: the kidney donor risk index. Transplantation. 2009; 88(2): 231-236.

²Axelrod DA , Sung RS, Meyer KH, Wolfe RA , Kaufman DB. Systematic evaluation of pancreas allograft quality, outcomes and geographic variation in utilization. Am J Transplant. 2010; 10: 837-845.

Notes

Population Reported

Figure titles indicate adult or pediatric populations; if not specified, data include patients of all ages. In the past, lung data included patients 12 years or older with adults, and figure titles specified the age ranges. The 2019 report grouped all lung patients 18 years or older with adults and younger patients with children.

Unless otherwise specified, data in each organ-specific chapter include both isolated transplants and multi-organ transplants of the given type. For example, patients on the kidney transplant waiting list include those listed for an isolated kidney, kidney-pancreas, or any other organ combination that includes kidney.

Waitlist populations are no longer reported at the person level. If a patient is listed at more than one center, that patient is counted once per listing.

Age

Adult patients are defined as those aged 18 years or older for all organs. For waitlist figures, age is defined at the time of first listing, unless otherwise specified.

Race/ethnicity

Multiracial patients are defined as other/unknown. When a given race group is not shown, it is included with other/unknown.

Pancreas data

Pancreas data encompass the three types of pancreas waiting lists or transplants: simultaneous kidney-pancreas (SPK), pancreas after kidney (PAK), and pancreas transplant alone (i.e., without kidney; PTA). Pancreata used for islet transplant are excluded.

MELD Score

MELD scores shown in figures and tables are calculated MELD scores, not allocation MELD scores, unless otherwise specified.

Metropolitan and non-metropolitan designation

Many data are displayed by the designation of a candidate's or recipient's permanent ZIP code as metropolitan or non-metropolitan. We used Rural-Urban Commuting Area (RUCA) codes and defined metropolitan, micropolitan, small town, and rural areas. These were then collapsed into metropolitan areas, which include suburbs adjacent to major cities, and non-metropolitan, which include cities, towns, and rural areas of fewer than 50,000 people.

Data Requests

Requests for data can be made to SRTR at http://www.srtr.org or to OPTN at http://optn.transplant.hrsa.gov.

Websites

http://www.srtr.org is a public website containing transplant program-specific reports, organ procurement organization (OPO)-specific reports, summary tables, archives of past reports, timelines for future reports, risk-adjustment models, methods, basic references for researchers who use SRTR data files, links to current and past Annual Data Reports and their supporting documentation and data tables, answers to frequently asked questions, and other information.

https://securesrtr.transplant.hrsa.gov is a secure website that provides access to the prerelease program- and OPO-specific reports, survival spreadsheets, and other useful information. All individual authorized users from transplant programs and OPOs have their own unique logins for the secure site.

http://unos.org is a public website containing information on donation and transplantation, data collection instruments, data reports, education materials for patients and transplant professionals, policy development, and other information. This website also links to the OPTN website.

http://optn.transplant.hrsa.gov is a public website containing news, information, and resources about transplant and donation, including transplant data reports, policy development, and related boards and committees. It also contains allocation calculators, a calendar of events, answers to frequently asked questions, and other information.

Contact Information

Patient Inquiries

888-894-6361 (toll free)

Research Inquiries

OPTN/UNOS requests: 804-782-4876 (phone); 804-782-4994 (fax)

SRTR data requests: 877-970-SRTR (toll free); 612-873-1644 (fax)

Media Inquiries

301-443-3376 (HRSA/Office of Communications)
804-782-4730 (OPTN)
877-970-SRTR (SRTR)

Federal Program Inquiries

HHS/HRSA/HSB/DoT
5600 Fishers Lane
Parklawn Bldg, Eighth Floor West
Rockville, MD 20857
301-443-7577

Abbreviations

BMI	body mass index
CAKUT	congenital anomalies of the kidney and urinary tract
CDC	Centers for Disease Control and Prevention
CDRG	Chronic Disease Research Group
CKD	cystic kidney disease
CMV	cytomegalovirus
COPD	chronic obstructive pulmonary disease
CPRA	calculated panel reactive antibody
DBD	donation after brain death
DCD	donation after circulatory death
DD	deceased donor
DM	diabetes mellitus
DoT	Division of Transplantation
DSA	donation service area
EBV	Epstein-Barr virus
ECD	expanded criteria donor
ECMO	extracorporeal membrane oxygenation
ESRD	end-stage renal disease
eGFR	estimated glomerular filtration rate
FSGS	focal segmental glomerulosclerosis
GN	glomerulonephritis
HHS	Health and Human Services
HIV	human immunodeficiency virus
HLA	human leukocyte antigen
HMO	health maintenance organization
HRSA	Health Resources and Services Administration
HSB	Healthcare Systems Bureau
HTN	hypertension
ICU	intensive care unit
KAS	kidney allocation system
KDPI	kidney donor profile index
KDRI	kidney donor risk index
LAS	lung allocation score
LD	living donor
LVAD	left ventricular assist device
MELD	model for end-stage liver disease
mTOR	mammalian target of rapamycin
OPO	organ procurement organization
OPTN	Organ Procurement and Transplantation Network
ORPD	organs recovered per donor
OTPD	organs transplanted per donor
PAK	pancreas after kidney transplant
PELD	pediatric end-stage liver disease
PDRI	pancreas donor risk index
PRA	panel-reactive antibody
PTA	pancreas transplant alone
PTLD	posttransplant lymphoproliferative disorder
SCD	standard criteria donor
SGS	short-gut syndrome
SPK	simultaneous pancreas-kidney transplant
SRTR	Scientific Registry of Transplant Recipients
TAH	total artificial heart
UNOS	United Network for Organ Sharing
VAD	ventricular assist device

The publication was produced for the U.S. Department of Health and Human Services, Health Resources and Services Administration, by the Hennepin Healthcare Research Institute (HHRI) and by the United Network for Organ Sharing (UNOS) under contracts HHSH250201500009C and 234-2005-37011C, respectively.

This publication lists non-federal resources in order to provide additional information to consumers. The views and content in these resources have not been formally approved by the U.S. Department of Health and Human Services (HHS) or the Health Resources and Services Administration (HRSA). Neither HHS nor HRSA endorses the products or services of the listed resources.

OPTN/SRTR 2019 Annual Data Report is not copyrighted. Readers are free to duplicate and use all or part of the information contained in this publication. Data are not copyrighted and may be used without permission if appropriate citation information is provided.

Pursuant to 42 U.S.C. § 1320b-10, this publication may not be reproduced, reprinted, or redistributed for a fee without specific written authorization from HHS.

Suggested Citations
Full citation: Organ Procurement and Transplantation Network (OPTN) and Scientific Registry of Transplant Recipients (SRTR). OPTN/SRTR 2019 Annual Data Report. Rockville, MD: Department of Health and Human Services, Health Resources and Services Administration; 2021.
Abbreviated citation: OPTN/SRTR 2019 Annual Data Report. HHS/HRSA.

Publications based on data in this report or supplied on request must include a citation and the following statement: The data and analyses reported in the 2019 Annual Data Report of the U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients have been supplied by the United Network for Organ Sharing and the Hennepin Healthcare Research Institute under contract with HHS/HRSA. The authors alone are responsible for reporting and interpreting these data; the views expressed herein are those of the authors and not necessarily those of the U.S. Government.

This report is available at http://srtr.transplant.hrsa.gov. Individual chapters, as well as the report as a whole, may be downloaded.