Attachment A_The living donor collective a scientific registry for living donors_2017 AJT Online

© 2017 The American Society of Transplantation
and the American Society of Transplant Surgeons

American Journal of Transplantation 2017; XX: 1–9
Wiley Periodicals Inc.

doi: 10.1111/ajt.14365

Personal Viewpoint

The Living Donor Collective: A Scientific Registry for
Living Donors
B. L. Kasiske1,2,*, S. K. Asrani3, M. A. Dew4 ,
M. L. Henderson5, C. Henrich1, A. Humar6,
A. K. Israni1,2, K. L. Lentine7, A. J. Matas8,
K. A. Newell9, D. LaPointe Rudow10,
A. B. Massie5, J. J. Snyder1, S. J. Taler11,
J. F. Trotter3 and A. D. Waterman12 on behalf of
the Living Donor Collective participants†
1

Scientific Registry of Transplant Recipients, Minneapolis
Medical Research Foundation, Minneapolis, MN
2
Department of Medicine, Hennepin County Medical
Center, Minneapolis, MN
3
Transplant Hepatology, Baylor University Medical
Center, Dallas, TX
4
Department of Psychiatry, University of Pittsburgh
School of Medicine, Pittsburgh, PA
5
Department of Surgery, Johns Hopkins University
School of Medicine, Baltimore, MD
6
Department of Surgery, University of Pittsburgh School
of Medicine, Pittsburgh, PA
7
Department of Medicine, Saint Louis University, St.
Louis, MO
8
Department of Surgery, University of Minnesota,
Minneapolis, MN
9
Department of Surgery, Emory University School of
Medicine, Atlanta, GA
10
Recanati Miller Transplantation Institute, Mount Sinai
Hospital, New York, NY
11
Division of Nephrology and Hypertension, Mayo Clinic,
Rochester, MN
12
David Geffen School of Medicine at UCLA, Kidney
Transplant Program, Los Angeles, CA
*Corresponding author: Bertram L. Kasiske,
[email protected]
†
Living Donor Collective participants are listed in the
appendix.
In the setting of an overall decline in living organ
donation and new questions about long-term safety,
a better understanding of outcomes after living
donation has become imperative. Adequate information on outcomes important to donors may take
many years to ascertain and may be evident only by
comparing large numbers of donors with suitable
controls. Previous studies have been unable to fully
answer critical questions, primarily due to lack of
appropriate controls, inadequate sample size, and/or
follow-up duration that is too short to allow detection of important risks attributable to donation. The
Organ Procurement and Transplantation Network

does not follow donors long term and has no
prospective control group with which to compare
postdonation outcomes. There is a need to establish
a national living donor registry and to prospectively
follow donors over their lifetimes. In addition, there
is a need to better understand the reasons many
potential donors who volunteer to donate do not
donate and whether the reasons are justified. Therefore, the US Health Resources and Services Administration asked the Scientific Registry of Transplant
Recipients to establish a national registry to address
these important questions. Here, we discuss the
efforts, challenges, and opportunities inherent in
establishing the Living Donor Collective.
Abbreviations: CI, confidence interval; CMS, Centers
for Medicare & Medicaid; CV, cardiovascular; ESRD,
end-stage renal disease; HR, hazard ratio; HRS,
Health and Retirement Study; HRSA, Health
Resources and Services Administration; HUNT,
Health Study of Nord-Trøndela; MACE, major
adverse cardiac event; NA, not available; NDI,
National Death Index; NHANES, National Health and
Nutrition Examination Survey; OPTN, Organ Procurement and Transplantation Network; PCD, Pharmaceutical Claims Data Clearinghouse; SAC, Standard
Acquisition Costs; SRTR, Scientific Registry of Transplant Recipients
Received 27 December 2016, revised 20 April 2017
and accepted for publication 07 May 2017

Introduction
The first successful human organ transplant took place in
1954, when 23-year-old Ronald Herrick donated a kidney
to his identical twin brother Richard. Ronald eventually
developed end-stage renal disease (ESRD) requiring
hemodialysis and died at age 79 of cardiovascular disease complications. As reported in local news sources
(Data S1), he had no regrets about his decision to
donate, but his donation raised many questions that
remain unanswered today. Did donating a kidney cause
or contribute to ESRD? Did donating a kidney cause or
contribute to his cardiovascular disease or other complications known to be associated with chronic kidney disease (1)? Donors should know how donation may affect
their health and whether they can take steps to prevent
complications. Candidates for donation and their families,
1

Kasiske et al

intended recipients, transplant programs, and the general
public also need to know what risks donors are taking
and how their risk varies according to demographic and
clinical profiles.

What Have We Learned From Donor
Studies?
There will never be randomized controlled trials of living
organ donation. Retrospective observational studies,
including large cohorts of all living donors, maximize
duration of follow-up while avoiding the inevitable attrition of participants in prospective studies. Five large retrospective studies of living kidney donors matched to
controls have been performed using methods designed
to identify persons whose baseline health was similar to
the donors’ health (Table 1) (2–6). These studies produced
conflicting results. Choosing appropriate controls in retrospective studies of donors is difficult, at best. Donors
undergo extensive evaluation, including radiographic imaging studies to ensure that they are healthy. Controls from
population health surveys have not undergone such extensive evaluations and may not be as healthy as donors. In
addition, studies to date have used relatively short-term
follow-up and cannot reliably ascertain the lifetime risk of
donation (Table 1).
Few studies have addressed long-term outcomes after
living liver donation. Muzaale et al reported that cumulative mortality for living liver donors was similar to that for
living kidney donors and healthy community residents at
2 years (7). In the Adult to Adult Living Donor Liver
Transplantation Cohort Study (A2ALL), with up to
10 years of follow-up, 6% of donors first experienced
complications > 1 year after donation (8). Two of three
deaths in the cohort occurred > 1 year after donation
(one drug overdose and one suicide). Despite the importance of the A2ALL findings, these data have limitations,
including follow-up of < 6 years for most A2ALL donors.
Ideal controls for comparing outcomes of actual donors
would be candidates for kidney and liver donation who
completed their evaluations and were found to be suitable
but ultimately did not donate due to factors unrelated to
their physical or mental health. However, to our knowledge, no long-term follow-up studies of donor candidates
have been carried out. Likewise, we do not know how
many potential donors are evaluated and found to have
risk factors for conditions that preclude them from donating. Nor do we know how many might have been suitable
donors despite these risks, or how often the outcomes of
perceived risks became reality. For example, many donors
are rejected because they are perceived to be at high risk
for type 2 diabetes, but we do not know what proportion
of these potential donors actually develop diabetes or
develop chronic kidney disease as a result. The uncertainty
in predicting outcomes potentially affected by organ
2

donation has no doubt contributed to the substantial variability in living donor acceptance criteria adopted by transplant programs across the United States.

Is Our Knowledge Gap a Barrier to Living
Organ Donations?
The number of living donor kidney transplant procedures
in the United States decreased 14.3%, from its peak of
6,572 in 2005 to 5,629 in 2016 (Figure 1A) (9). During
the same period, the number of deceased donor kidney
transplant procedures increased 35.5%, from 9,913 in
2005 to 13,431 in 2016. The reasons for the decline in
living kidney donation are impossible to know with certainty. The economic well-being of the US population
has been tenuous, and many potential donors may feel
less secure in the decision to donate an organ if faced
with prospects of job loss, health or life insurance loss,
and uncertain household income. Further, studies reporting previously unrecognized attributable risks of living
kidney donation have appeared in the medical literature
and could have played a role in dissuading potential
donors from donating (Table 1). In particular, outcomes
for African American donors have been a source of concern (10) and may have implications for access to living
donor transplantation among African American transplant
candidates.
Living liver donations peaked at 524 in 2001. A highly publicized report of a living donor death likely led to a precipitous decline in the number of living donor liver
transplants performed in the ensuing years in the United
States (11). Only 219 living donor liver transplants were
performed in 2009, but this number increased to 345 in
2016 (Figure 1B) (9). Although the focus of living liver
donors has understandably been on short-term outcomes, interest and uncertainty have been growing
among donors and caregivers regarding long-term effects
(12). Also uncertain is the potential impact of lack of information on donor outcomes on living liver donation rates.
Few living donor transplants of organs other than kidney
or liver are performed. Between 2005 and 2016, 20 living
donor intestine transplants were performed (9), likely
reflecting relatively limited demand. Twelve living donor
lung transplants were performed: four in 2006, three in
2007, and one each in 2005, 2009, 2011, 2012, and
2013. Only five living donor pancreas transplants have
been performed: two in 2005 and one each in 2006,
2008, and 2013.

Why We Need a Scientific Registry for
Living Donors
Maximizing the benefits of living organ donation can best
be achieved if we first fully understand the risks.
American Journal of Transplantation 2017; XX: 1–9

US, OPTN
Reese, 2014 (6)

CI, confidence interval; CV, cardiovascular; ESRD, end-stage renal disease; HR, hazard ratio; HRS, Health and Retirement Study; HUNT, Health Study of Nord-Trøndela; MACE,
major adverse cardiac event; NA, not available; NHANES, National Health and Nutrition Examination Survey; OPTN, Organ Procurement and Transplantation Network.
1
Median follow-up in years.
2
Excluding individuals with contraindications to kidney donation.
3
Four provincial healthcare databases, Ontario, Canada.
4
32 621 of 74 991 participants considered fit for kidney donation.
5
Cumulative incidence at 15 years per 10 000 (95% CI).
6
Aged at least 55 years matched to similar-risk individuals in the HRS.

7.41
1996–2006
6

HRS2

US, OPTN
Muzaale, 2014 (5)

3368

6

1996–2006

7.41

3368

15.01
1988–1994
9364
NHANES2
7.61
1994–2011

HUNT2
15.11
1963–2007
1901
Norway
Mjøen, 2013 (4)

96 217

NA
32 6214

24.91

Mortality p > 0.05
Death or MACE HR 0.66 (0.48–0.90)
MACE HR 0.85 (0.57–1.27)
All-cause death HR 1.3 (1.11–1.52)
CV death HR 1.40 (1.03–1.91)
ESRD HR 11.38 (4.37–29.63)
ESRD in donors HR 30.8 (24.3–38.5)5
ESRD in controls HR 3.9 (0.8–8.9)5
All-cause death HR 0.90 (0.71–1.15)
NA
6.41
1988–1994
1992–2009
9364
20 280
NHANES
Administrative2,3
6.3
6.81
1994–2009
1992–2009
US, OPTN
Administrative3
Segev, 2010 (2)
Garg, 2012 (3)

80 347
2028

Follow-up
Years
Source

n

2

n
Years

Follow-up

Source

Controls
Donors

First author,
publication year

Table 1: Retrospective studies of mortality and end-stage renal disease in kidney donors compared with healthy controls

1

Outcome (95% CI)

The Living Donor Collective

American Journal of Transplantation 2017; XX: 1–9

Outcomes such as death, ESRD, or liver failure are
expected to be infrequent among donors screened to be
healthy, and therefore large numbers of donors must be
followed for long periods of time to measure donationattributable risks for outcomes important to donors.
Results from the registry will not be completely realized
for years, but the time to start is now. There are also
good reasons to collect follow-up information on donor
candidates who do not donate. First, the best individuals
with whom to compare outcomes of donors are fully
evaluated donor candidates who do not donate for reasons unrelated to the risk of donation per se, such as
when other preferred donors are available or the proposed recipient does not undergo transplant. We do not
know how many such donor candidates there are, but
it is likely that only a national registry can provide sufficient numbers to compare their outcomes with those of
actual donors. Second, it is equally important to understand whether medical reasons donor candidates do not
donate are justifiable. Only by following donor candidates
who are turned down or decide not to donate due to
concerns that donation would adversely affect their
health can we determine whether those concerns are
justified. Finally, criteria used to select donors are likely
to continue to evolve in the future, and therefore studying the outcomes of candidates and donors once is not
sufficient. The need to understand the effects of
changes in our evaluation and selection process will be
ongoing, and monitoring outcomes of future candidates
and donors will always be important. As long as living
donation is practiced, comprehensive follow-up will be
necessary.

Establishing the Scientific Registry for
Living Donors
The US Health Resources and Services Administration
(HRSA) asked the Scientific Registry of Transplant
Recipients (SRTR) to establish a national Scientific Registry for Living Donors (Figure 2). We recruited 10 transplant centers to initiate a vanguard, pilot study to
establish the logistics of data collection, with the ultimate goal of including all living donor transplant programs in the United States (Table 2). We held our first
investigators meeting at SRTR in Minneapolis, Minnesota, on April 4–5, 2017. We propose to register all
living liver and kidney donor candidates who come to a
transplant program for evaluation and undergo a history
and physical examination. We understand that many
potential donors are screened before they come to the
transplant program, but it would be virtually impossible
to define a “potential donor” based on information that
is variously and often incompletely collected at the time
of initial contact. In addition, there would be far too
many potential donors to allow SRTR to maintain contact and follow-up. Therefore, for the pilot period we
adopted a practical definition that will allow data
3

Kasiske et al
A

16,000
14,000

13,431

Deceased donors

12,000
9,913

12,250

10,660 10,591 10,553 10,442 10,622

11,043 10,868 11,163

11,570

10,000
8,000

Living donors
6,572

6,435

6,043

5,968

6,388

6,278

6,000

5,773

5,619

5,733

5,538

5,628

5,629

4,000
2,000
0
2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016
B

8,000

7,496

Deceased donors
7,000
6,121

6,363

6,228

6,768

6,070

6,101

249

219

6,009

6,095

6,010

282

247

246

6,203

6,450

6,000
5,000
4,000
3,000
2,000

Living donors
1,000

323

288

266

252

280

359

345

0
2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016
Figure 1: Trends in the numbers of kidney transplants (A) and liver transplants (B) in the United States, 2005–2016.

collection for what we believe will be a manageable
number of donor candidates who have undergone at
least some prior screening.

Initial Registration Information
Candidates will be registered through a secure online
data collection system provided by SRTR. Transplant
programs will be asked to collect data that are currently collected as part of the Organ Procurement and
Transplantation Network (OPTN) Living Donor Registration (Table S1). Ultimately, we anticipate that the information collected will be electronically transferable to
OPTN to avoid duplicate data collection. In addition,
these data may eventually be collected using other
platforms and then electronically transmitted to SRTR.
However, during the vanguard phase SRTR will develop
4

an independent, web-based data entry system. Programs will also be asked to supply the reasons a
donor candidate did not donate. Proposed reasons have
been derived from the medical literature for kidney
donors (Table S2) and for liver donors (Table S3). These
lists of reasons may be modified in the course of the
vanguard phase. Transplant programs will be asked to
provide the reasons for not donating when it becomes
clear that a donor candidate will not donate or no
more than 2 years after registration if the potential
donor has not donated (Figure 3).

Follow-Up Information From Surveys
Follow-up information will be collected by SRTR, not by
the transplant programs. SRTR will establish procedures
for maintaining contact with participants by using a brief
American Journal of Transplantation 2017; XX: 1–9

The Living Donor Collective

Sep 2016 - Apr 2017
•Feasibility study done
•HRSA modifies contract
to develop registry
•Steering Commiee
plans data collecon
•10 pilot sites meet

May 2017 - Dec 2017
•OMB reviews data
collecon proposal
•Logiscs of data
collecon finalized
•OMB approves plan
•First candidates enroll

Jan 2018 - Sep 2019
•Connue pilot site
enrollment
•Begin SRTR follow-up (1
year aer registraon)
•Begin SRTR data links

Oct 2019 - Sep 2020
•Begin enrolling at
other programs
•Develop and submit
to HRSA a plan to
expand to all programs

Figure 2: Four-year timeline for establishing the Living Donor Collective. HRSA, Health Resources and Services Administration;
OMB, Office of Management and Budget; SRTR, Scientific Registry of Transplant Recipients.
Table 2: Living donor transplants in 2016 at 10 centers participating in the pilot living donor collective

Kidney and liver centers: 7
MNMC, Rochester Methodist
Hospital, Mayo Clinic
CAUC, UCLA Medical Center
NYMS, Mount Sinai Medical Center
MNUM, University of Minnesota
Medical Center
MDJH, Johns Hopkins Hospital
TXTX, Baylor University Medical Center
PAPT, University of Pittsburgh
Med Center
Kidney-only centers: 3
GAEM, Emory University Hospital
MNHC, Hennepin County
Medical Center
MOSL, Saint Louis University Hospital
Total participating centers: 10

Kidney

Liver

Total

149

22

171

142
102
92

0
21
4

142
123
96

53
35
13

7
17
28

60
52
41

88
19

0
0

88
19

6
699

0
99

6
798

Four-letter abbreviations are Organ Procurement and Transplantation Network unique identifiers.

survey instrument (Table S4). SRTR will contact participants via mail, email, social media, or phone approximately 1 year after donation or 1 year after determination
of nondonation, and approximately every 1–2 years,
thereafter. The exact intervals will be determined by feedback from participants and by cost restraints. In addition,
we will work with the 10 participating vanguard sites to
American Journal of Transplantation 2017; XX: 1–9

develop a separate, comprehensive survey instrument for
participants that will include both medical and psychosocial issues important to candidates and donors. This comprehensive survey will be administered to a random
sample of participants at times to be determined to maximize the amount of accrued follow-up information on
potential complications of donation.
We will also develop and administer surveys addressing
specific complications of interest and importance to
donors. For example, three studies have reported that
preeclampsia is more common in kidney donors than in
the general population, including women selected as controls by baseline good health similar to donors (13–15).
Therefore, we will place a high priority on establishing
the risk of kidney donation with regard to pregnancy. We
will work with the participating sites to develop a survey
instrument for pregnancy complications for all women
aged 45 years or younger.
However, we cannot address all potentially important
issues with follow-up surveys. Therefore, an important
feature of the collective is our ability to provide the
means for other investigators to conduct their own investigations. As a public entity under contract to HRSA,
SRTR can help investigators gain access to information
to conduct studies that will improve our understanding of
living donation outcomes. The only restriction is the guarantee to protect privacy of individual health information.
5

Kasiske et al

Potenal donor visits
program and undergoes
history and physical

Program registers
candidate

No donaon

Donaon

Program reports to
SRTR reason(s) for
not donang

SRTR performs
surveys and
database linkages

SRTR reports
follow-up
informaon
Figure 3: Flow of information. Dark gray indicates the responsibility of the transplant program and light gray the responsibility of
SRTR. From top to bottom and left to right: (1) a potential donor does not become a candidate requiring registration until he or she visits a program and undergoes history and physical examination; (2) the program registers the candidate with SRTR; (3) if donation does
not occur, the program reports the reasons for not donating to SRTR; (4) SRTR maintains contact with candidates and donors with follow-up surveys and database linkages; (5) SRTR reports follow-up information on each program’s secure site and summary follow-up
information to the general public. SRTR, Scientific Registry of Transplant Recipients.

Follow-Up Information From Linking
Registry Data to Other Databases
Because transplant programs cannot provide comprehensive long-term follow-up information on all of their donor
candidates, we will link our registration data to Centers
for Medicare & Medicaid Services (CMS) data to determine which participants develop ESRD. Data on endstage liver disease among donor candidates will be
obtained by linking to the OPTN transplant registry and
CMS data. In addition, we will link donor candidate registry data to the Centers for Disease Control and Prevention, the National Center for Health Statistics, and the
National Death Index to obtain data on deaths and
causes of death among donors. For other complications,
we will link registry data to a pharmaceutical claims data
(PCD) clearinghouse. The PCD collects prescription drug
fill records reimbursed by private payers, public payers,
and self-paid fills and has been explored in pilot form to
describe several exposures and outcomes of interest to
donors, such as pharmaceutical treatments for depression (16), hypertension (17), diabetes (18), gout (19), and
pain (20,21). Other public and private data sources will
also be used as available to obtain long-term follow-up
information on donors and potential donor controls.

will help determine what questionnaires and follow-up
information are most important to donors and which
items the registry should prioritize. In addition, the registry will maintain a website to provide the latest information of importance to donors, focusing not only on
outcomes but also on other issues and information that
may be helpful, such as information on kidney paireddonation programs, the National Living Donor Assistance
Center, and other resources and links.

Goals, Challenges, and Solutions
Our overarching goal is to optimize living organ donation in
the United States. To achieve this goal, we face a number
of challenges (Table 3). Although donor candidates are typically screened before undergoing detailed evaluation, it is
difficult to define when someone becomes a donor candidate, and the number of candidates registered will no
doubt vary from program to program. These numbers and
the time and effort required to register candidates will be
determined as part of the pilot study.
Another challenge is determining reasons for not donating. This, too, will be addressed as part of the pilot
study. The list of potential reasons for not donating and
how these are defined and determined will be optimized.

Maintaining Relevancy for Participants
To better understand what potential and actual donors
want to know, we established an advisory committee
comprising previous donors and individuals who have
studied issues related to organ donation. This committee
6

The methods that SRTR should use to best maintain contact with participants must also be determined. Some
combination of mail, phone, email, and social media will
no doubt be required to suit the needs of all individuals.
Information of interest to participants and programs and
American Journal of Transplantation 2017; XX: 1–9

The Living Donor Collective
Table 3: Living donor collective goals, challenges, and solutions
Goals
Vanguard study to determine
1) Which living donor candidates
should be registered.
2) Possible reasons for not donating.
3) Best methods for follow-up.

4) What candidates, donors,
and programs want to know.
5) How to provide candidates,
donors and programs
with what they want to know.

Comprehensive registry to
6) Achieve willing participation
of every living donor program in the US.
7) Minimize data collection burdens.

Challenges

Solutions

Heterogeneity in practices at programs

Optimize definitions and collection

Difficult to define and collect
Difficult to maintain contact

Optimize definitions and collection
• Establish database linkages that
ensure nearly 100% follow-up
• Establish optimal survey methods

Learning what candidates/donors want to know

Survey candidates, donors and
programs
• Web-based information
• Newsletters
• Social media

Informing candidates, donors, and programs

Benefits need to outweigh burdens
Time and effort of initial registration

8) Remove barriers of
over-estimated risk to
encourage living donation.

Determine outcomes of candidates
who do not donate due to perceived
risk of diabetes, kidney stones,
CVD, and CKD, etc.

9) Achieve 100% follow-up
of critical outcomes, e.g.,
death, cause of death, and ESRD.

• Registration of all donor candidates
• Defining controls declining for
reasons not related to health

10) Achieve adequate
follow-up of key outcomes,
e.g., preeclampsia, gout,
and access to care.

• Adequate participation
• Adequate resources to
collect follow-up information

Provide useful information for
candidates, donors, and programs
• Public Health Authority eliminates
need for program IRB approvals
• CMS coverage as a SAC
• SRTR provides follow-up

SRTR surveys and data linkages to
assess outcomes of donor
candidates who do not donate to
determine if decisions predict
outcomes
Link to NDI and CMS for deaths,
causes of death, and ESRD

SRTR surveys and data linkages

CKD, chronic kidney disease; CMS, Centers for Medicare & Medicaid Services; CVD, cardiovascular disease; ESRD, end-stage renal
disease; IRB, institutional review board; NDI, National Death Index; SAC, standard acquisition costs; SRTR, Scientific Registry of Transplant Recipients.

how to provide this information must likewise be determined by obtaining appropriate feedback.
Key to the success of a comprehensive universal registry
of living donor candidates ultimately will be the willing
participation of transplant programs nationwide. This
cooperation will be possible only if the time and effort
required to register candidates is minimal. We will strive
to achieve this goal. In addition, by SRTR assuming the
burden of collecting long-term follow-up information, we
hope to provide a return on the initial investment
required to register donor candidates by providing useful
information for programs and their donor candidates.
American Journal of Transplantation 2017; XX: 1–9

Summary
There is a critical lack of information on long-term outcomes of living organ donors. Understanding outcomes
of importance to donors, such as end-stage organ failure
(ESRD, liver failure) and mortality, require large numbers
of donors, long-term follow-up, and adequate controls.
These conditions are likely to be met only by establishing
a national registry of living donors. SRTR is establishing a
registry whereby transplant programs will register all
potential kidney and liver donors who come to the program for evaluation. SRTR will provide long-term followup of donors and donor candidates who do not donate
7

Kasiske et al

through regular surveys and by linking data to other
health care registries. The resulting information will be
made available to all stakeholders to help fill the current
gaps in our understanding of outcomes after living organ
donation.

Acknowledgments
This work was conducted under the support of the Minneapolis Medical
Research Foundation, contractor for SRTR, as a deliverable under contract HHSH250201500009C (US Department of Health and Human Services, Health Resources and Services Administration, Healthcare
Systems Bureau, Division of Transplantation). As a US government–
sponsored work, there are no restrictions on its use. The authors thank
SRTR colleague Nan Booth, MSW, MPH, ELS, for manuscript editing.

Disclosure
The authors of this manuscript have no conflicts of interest
to disclose as described by the American Journal of
Transplantation.

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Appendix Additional Living Donor Collective
Participants
R. Bailey, Department of Surgery, University of Minnesota, Minneapolis, Minnesota; A. Barber, Department
of Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania; L. Berndt, Division of
Nephrology, Department of Medicine, Hennepin County
Medical Center, Minneapolis, Minnesota; G.M. Danovitch, David Geffen School of Medicine at UCLA, Kidney
Transplant Program, Los Angeles, California; M. DunbarForrest, David Geffen School of Medicine at UCLA, Kidney Transplant Program, Los Angeles, California; R.
Follmer, SRTR, Minneapolis Medical Research Foundation, Minneapolis, Minnesota; B. Haydel, Recanati/Miller
Transplantation Institute, Mount Sinai Hospital, New
York, New York; H.F. Hunt, Living Donor, New England
States Committee on Electricity, Longmeadow, Massachusetts; P.J. Kacani, Living Donor, Richmond, Virginia;
S.A. Leander, Milwaukee School of Engineering, School
of Nursing, Milwaukee, Wisconsin; AS Levey, Living
Donor, Division of Nephrology, Tufts Medical Center,
Boston, Massachusetts; M.A. Lewis, Living Donor, RTI
International, Research Triangle Park, North Carolina;
S.B. Mathews, Department of Surgery, Emory University
School of Medicine, Atlanta, Georgia; D.M. Myer, Transplant Hepatology, Baylor University Medical Center, Dallas, Texas; D.J. Olenick, Living Donor, BLDG
Management Company, New York, New York; J.D. Peipert, David Geffen School of Medicine at UCLA, Kidney
American Journal of Transplantation 2017; XX: 1–9

The Living Donor Collective

Transplant Program, Los Angeles, California; J.R. Rodrigue, Department of Surgery, Beth Israel Deaconess
Medical Center, Boston, Massachusetts; K. Schwab,
Division of Nephrology and Hypertension, Mayo Clinic,
Rochester, Minnesota; D. Segev, Department of Surgery,
Johns Hopkins University School of Medicine, Baltimore,
Maryland; M. Shater, SRTR, Minneapolis Medical
Research Foundation, Minneapolis, Minnesota; P. Shim,
Living Donor, Honolulu, Hawaii; E. Steffens, Hennepin
County Medical Center, Minneapolis, Minnesota; S. Stencel, Living Donor, University of California Davis Medical
Center, Sacramento, California; M. Stevens, Division of
Nephrology and Hypertension, Mayo Clinic, Rochester,
Minnesota; S. Tenge, Saint Louis University Center for
Abdominal Transplantation, St. Louis, Missouri; B.
Thompson, SRTR, Minneapolis Medical Research Foundation, Minneapolis, Minnesota; J.H. Wang, Division of
Nephrology, Department of Medicine, Hennepin County
Medical Center, Minneapolis, Minnesota.

American Journal of Transplantation 2017; XX: 1–9

Supporting Information
Additional Supporting Information may be found in the
online version of this article.
Data S1. Supplementary material.
Table S1. Living donor and potential living donor initial
registration worksheet (kidney and liver).
Table S2. Reasons potential living kidney donors do not
donate.
Table S3. Reasons potential living liver donors do not
donate.
Table S4. Brief survey instrument used to maintain contact with all participants at approximately 1 year after
registration has been completed.

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