Comments

Amy Devin | 09/17/2025

I just reached my 2-year mark after donating my kidney in August 2023. My after-care has been disappointing, and I want more data on the long-term health of donors like me. As it is, my best source of information is Facebook donor groups. That's ridiculous. I've been part of an amazing science-based procedure, yet there's no science to support me now.

OPTN Histocompatibility Committee | 09/15/2025

The Histocompatibility Committee thanks the Living Donor Committee for their work on this proposal. The Committee is supportive of efforts to improve data collection for living donors and non-donors. They also agree with the decision to make data collection voluntary for non-donors after the one-year mark, with respect for non-donors who may not wish to participate in long-term follow-up.

Region 7 | 09/12/2025

Sentiment: 2 strongly support, 8 support, 5 neutral/abstain, 2 oppose, 0 strongly oppose

Comments: Attendees discussed questions and concerns regarding living donor data collection and follow-up. Several asked for clarification on what constitutes the “first in-person visit,” whether it begins with initial blood draws for ABO compatibility or after a donor is determined compatible and begins the formal evaluation process. Some supported standardization of follow-up and data collection but requested clarity on whether participation in the living donor collective would be mandatory, whether programs would have access to reports, and whether donors could opt out of future contact. Concerns were raised about the use of non-donor registration forms, noting that follow-up with individuals not approved as donors may not be well received. Attendees emphasized that in-person requirements should apply only after formal evaluation begins, following education, donor advocate meetings, and informed consent. While most agreed that collecting living donor data is important, they highlighted the administrative burden on transplant centers, the variation in how donors present and are evaluated, and differences across programs in how multiple potential donors are managed. There was a recommendation for prioritizing long-term outcomes of actual donors over expanded non-donor data collection.

Region 8 | 09/12/2025

Sentiment: 1 strongly support, 12 support, 5 neutral/abstain, 1 oppose, 0 strongly oppose

Comments: An attendee questioned whether the SRTR should be explicitly identified as the responsible party, noting that while SRTR is contracted through HRSA under NOTA, the contract could change, and tasks would transfer with it. There was agreement that the data could provide valuable insight into living donation, but transplant centers emphasized the administrative burden it would place on staff. There was a suggestion for extending the reporting timeframe from 90 days to one year, while other attendees supported maintaining a 90-day turnaround if tied either to the date of transplant center denial or the donor’s decision to withdraw. Concerns were raised about the length and complexity of the proposed non-donor form, with requests to streamline it before implementation. Attendees also questioned the definition of “non-donation,” whether it applied to donors who declined, were declined, or who remained in paired exchange beyond 90 days. There was concern that nuanced reasons for declining donors might not be adequately captured. Additional questions were raised about what specific demographic, clinical, and decision-making data would be collected, and how data from non-donors would be used to inform understanding of barriers to living donation and long-term donor outcomes. Attendees noted financial barriers for donors, including complications with insurance coverage, evaluation costs, and lack of financial protection for complications after donation. There was support for shifting long-term follow-up responsibility after one year to SRTR along with SRTR contacting donors directly. While the burden of data collection remained a central concern, some noted that improved understanding of barriers could ultimately encourage more living donors.

Region 11 | 09/11/2025

Sentiment: 2 strongly support, 12 support, 4 neutral/abstain, 7 oppose, 0 strongly oppose

Comments: A member expressed concern that their center receives a lot of potential living donors, who do not end up moving forward in the process for a variety of reasons, and this proposal could potentially add burden to transplant programs or disrupt workflow. An attendee noted that the two year follow up conducted by transplant programs helps them learn and that removing this requirement might negatively impact future donors because programs may not continue to follow them. A member stated they do not favor additional forms but understand the rationale and suggested implementing the process for a specific time period followed by reevaluation. An attendee emphasized that two-year follow-up is essential for donor health and noted this change would place additional demands on coordinators and divert nursing time from other responsibilities. A member expressed concern about using the first in-person appointment as the start of data collection, recommending instead the first appointment with the pre-transplant team due to remote evaluations. An attendee acknowledged the value of comprehensive data collection but raised several concerns: operational burden from expanded data collection, uncertainty about center-specific versus national reporting, variability in testing practices, and unclear cost responsibility. A member recommended that the 90-day living donor form submission for those who do not proceed should be based on the evaluation closure date, not the first clinic visit. An attendee supported making the second-year follow-up voluntary and conducted by SRTR, but did not support collecting data on donors who decide not to donate, citing privacy concerns and limited actionable value. A member supported the initiative but noted the increased data collection burden for evaluations that do not proceed and emphasized that long-term follow-up response rates may be lower if conducted by an unfamiliar organization.

Michael Murphy | 09/10/2025

Thank you for moving the 2023 proposal forward by clarifying the process and providing specifics on the types of data to be collected. I am a living kidney donor and long-time living donor advocate so I am responding from that perspective. Here is my input to the topics specifically requested by the Committee.

* Feedback on the decision to remove the two-year follow-up (page 18).

My feeling is donors generally would be indifferent as to who collects follow-up data – the transplant center or SRTR – as long as the data are collected. Therefore, I believe donors would support removal of the two-year follow up requirement for the transplant centers because SRTR will pick it up from there (and beyond).

However, there are two consequences that could alter my assessment. First is if the transplant center uses the removal as a signal to cut off support of the donor at the 12-month mark. Donors value their relationships with the transplant teams as a resource to answer questions during recovery and to hold the centers accountable for care and potential complications over the longer term. The Committee does encourage centers to maintain a relationship beyond the first 12 months, but stronger responsibility and accountability may be needed in practice.

Second is concern that funding of the donor’s follow-up visits will disappear after the 12-month visit. A 2022 study (Lentine, Sarabu, et al.) revealed 89% of transplant centers cover the cost of a donor’s follow-up visits in a manner that does not involve charges to the donor or donor’s insurance. (Unfortunately, 11% actually charge the donor!) Thus, the majority of donors would look for assurances that the cost of follow-up visits would still be covered if SRTR were to take over data collection in year two. The latest version of the proposal does not state how the cost of follow up in year two (and beyond) would be covered. Protecting donors from the cost of these visits supports the goal of donor financial neutrality and, perhaps most importantly for the success of this project, encourages ongoing participation by donors in these annual visits. If SRTR does not have a way to cover the cost of the visit at the 24-month mark, the removal represents a financial setback for most donors.

Therefore, it is difficult to endorse the change from the donor perspective until the Committee clarifies that this change will not adversely affect continuity of the donor’s relationship with the transplant center or coverage of follow-up visit costs.

* Feedback on the purpose and utility of the proposed data collection as a justification for the effort involved (page 20).

For the Data Advisory Committee’s (DAC) consideration, here are ways I would expect long-term living donor data to be used: improve donor selection criteria and risk assessment to yield better transplant outcomes and improve donor safety; evaluate transplant center performance including identifying high performers (to establish best practices) and other centers that would benefit from quality improvement; understand why potential living donors do not donate so action can be taken to remove modifiable barriers and increase the size of the donor pool; identify medical, psychosocial, and financial issues that emerge only after the long run; provide surgeons and their teams with details on pre-, peri-, and post-operative experience that can improve surgical processes and post-surgery care; protect transplant centers with informed consent statements backed by accurate and defensive data on donor experiences, including long-term outcomes; reveal gaps in living donor protections (medical issues, psychosocial issues, insurability, financial neutrality, etc.) that could guide interventions as a way to encourage donation as well as simply do the right thing for donors; determine whether alternative policies and procedures are warranted based on type of donor (related/unrelated, directed/nondirected, paired, etc.) and type of donated organ (kidney, liver); provide OPTN with information to improve policies (informed consent content, donor exclusion criteria, donor discharge instructions, follow-up procedures, etc.); inform living donors and their primary care physicians (PCP) of issues to monitor based on long-term experience; support peer-reviewed medical research that compares the long-term experiences of living donors with an appropriate health-matched comparator group; identify inequities in experiences based on age, location, race, ethnicity, gender, etc.; provide accountability and transparency to the interested parties of living donation – donors, potential donors, their families, medical professionals, mental health professionals, financial professionals, the U.S. Congress, state legislatures, OPTN/UNOS, the media, and the public – through regular reporting of donor experiences; monitor living donor safety on an ongoing “real time” (annual) basis that could initiate immediate interventions; and provide an example of world class living donor care.

The other issue baked into the DAC’s hesitancy is whether data can actually be collected from donors and non-donors. Concerns about donor and non-donor participation are valid but manageable. OPTN has shown that policy changes (Policy 18.5) can address lackluster participation rates by clarifying accountability and sharing best practices. The Living Donor Collective has also shown it can be effective in collecting data from donors over many years. Also, benchmarking other living donor registries could reveal useful policies and practices for encouraging and maintaining participation. Frankly, even if participation rates are less than desired, something is better than nothing.

* Considerations for the Community (page 27).

3. Are there any concerns related to barriers to donation or long-term outcomes not addressed among members of the living donor community? The only open issue I see is how the process would work for the growing number of people who are “double donors” – those who have donated both a kidney and liver. How will they be accounted for in the registry and are there any special issues that should be tracked for them long term?

4. Do you endorse removal of the current two-year required OPTN follow-up data collection and submission for living donors, to be changed to a voluntary annual follow-up administered by the SRTR (centers are still encouraged to follow up with patients, but no data submission would be required)? See my previous comments from the donor perspective on this topic.

Do you endorse the SRTR contacting the patient directly? Yes, and if possible, also getting contact information for the donor’s PCP so the PCP can be included in the annual outreach.

5. Are there any educational considerations that you believe would be helpful for living donors to understand these potential changes? Yes. One possibility is to include language in “informed consent” that describes the registry and the expectation (or desire) that the donor will participate annually for life. A second possibility is to create a letter or brochure that goes to the donor at the time of discharge from the hospital that describes the process in detail – the timing of follow-up visits, data to be collected, how it will be collected, how costs are covered, how to stay in contact, etc. The material could also include a letter to be shared by the donor with the donor’s PCP that describes the PCP’s potential involvement in the long-term data collection. Finally, there’s the opportunity to benchmark existing donor registries to learn how they communicate at the initiation of participation and on an ongoing basis.

Region 3 | 09/10/2025

Sentiment: 2 strongly support, 6 support, 1 neutral/abstain, 2 oppose, 1 strongly oppose

Comments: One attendee commented that it is vital to understand the long-term effects of living donation beyond 2 years. They went on to comment that transplant centers have tried to obtain the required follow up from living donors with no real impact. They recommend removing the two-year living donor follow-up requirement from the OPTN and transfer voluntary follow-up to the SRTR, which will follow the living donor and potential living donors long-term and hopefully increase data collection. Another attendee recommended that the committee consider allowing centers to batch report the non-donation data semi-annually to lessen the burden.

Glenna Frey | 09/10/2025

As a nephrology nurse, a family with kidney disease, and a nondirected living kidney donor in 2017, I know firsthand the importance of long-term donor follow-up. There is currently very little research on living donors beyond the required 2 years, which does a disservice to both potential donors and the patients who depend on them. Updating and improving the efficiency of living donor data collection is critical to protecting donor health, advancing research, and ensuring the best outcomes for recipients. I strongly support this proposal.

Jennifer Roberts | 09/08/2025

Living donors take on serious risk to help others. We deserve a system that tracks outcomes, learns from them, and gives us the knowledge we need to make one of the biggest decisions of our lives.

I know now that I didn’t have enough information about long-term outcomes when I donated my right kidney to a stranger in 2015 and the left lobe of my liver to another stranger in 2023. More than two years after my liver donation, I am experiencing ongoing health issues related to the surgery, yet there is no mechanism to track, assess, share, or learn from my experience so that others can benefit from it. That failure of follow-up is a systemic failure of duty—leaving donors on their own and future donor candidates in the dark.

I support the OPTN proposal to update and improve efficiency in living donor data collection. Shifting longer-term follow-up to SRTR and expanding data collection to include donor candidates are essential steps. This will reduce burden on centers, improve consistency nationwide, and—most importantly—begin to close this systemic gap and give future donors and donor candidates a more clear picture of the realities of living donation.

Lainie Ross | 09/08/2025

1. To collect the post-donation data, the donor needs to trust the organization. They are more likely to trust the institution where the surgery was done than the SRTR; also we know that living kidney donor health problems may not begin for 8 or more years. Limiting inperson examination/evaluation and data collection by the center to one year is going backwards (we originally collected for zero years, then 1 year and then 2 years)

2. 2 years is too short, but we should not decrease it. we need a system to collect data for life, but this should go hand-in-hand with examination and evaluation. we know that 20% of living donors do not have health insurance. just getting their data (without providing appropriate medical care) is using them purely as a means. They are also our patients.

3. Collecting data on nondonors should be anonymized (or at least deidentified). and they MUST have the right to refuse to have the data collected. a

4. As proposed we would be collecting a lot of PHI on non-donors which may not be desired by the nondonor. Especially since this will be done without (or prior) to getting informed consent. and so this may result in fewer living donors.

5. If I am overruled, and such data are collected, it MUST be done with a full consent process --that is a full consent process even before the discussion (which may impede living donation). it is not enough to do consent in a piece-meal approach--oh we are just getting you social security number to start a file, because this does not explain the whole process (and the value of using them for research as control non-donor to compare to donors). So in the consent process, it must be explained that we will use this data for research purposes.

Mythreyi Govindarajan | 09/05/2025

This policy change is a thoughtful and necessary evolution in the field of transplantation. By expanding the scope of data collection and centralizing long-term oversight under SRTR, it lays the groundwork for improved donor care, better-informed policies, and stronger outcomes. With careful implementation and a focus on donor rights, this policy could significantly enhance the living donation experience.

Betsy Snow | 09/05/2025

I am a living non-directed kidney donor 2018 and I strongly support collecting living kidney donor data past 2 years. The current requirement for 2 years of follow up is failing because many donors feel that the transplant centers aren’t interested in a donors issues after their donation. When donors call with issues they are not getting call backs so when the hospitals reach out for required data donors don’t respond. Until hospitals become more responsive collecting good data will be difficult. Obviously - some hospitals are better than others but this has been a recurring theme in the donors I have mentored since my donation. Without good comprehensive data it is hard to dispel all the myths around living kidney donation.

Aubrey Sepko | 09/04/2025

As a living kidney donor, I can confidently say that this information is vital. When I donated in 2011, the data shared with me was incredibly minimal. Little was (and still is) known about the long term risks and any complications. Donors should be able to make informed decisions about their bodies and any risks involved. If someone is willing to donate part of their body to help someone in need, the least we can do is provide them with data during the evaluation process to determine if this is a decision that they are comfortable with.

Anonymous | 09/04/2025

It is high time the OPTN focus on living donation. The OPTN puts so much energy into trying to make more marginal quality deceased donor organs work for the abundance of patients waiting for their life-saving organ transplant. The OPTN should put just as much, if not more, energy, time and resources into getting the best quality organs for the patients in need of transplantation (living donor organs). The living donors that the transplant system asks this of deserve lifetime follow up and scientifically and medically sound, controlled, data. The vast need for transplantation will not be met with deceased donation alone and living donation rates will remain stagnant (as they have for decades) unless the community can provide better data to help donor candidates inform their decisions to donate. Thank you to the committee for pushing this project forward and to the community for considering how much it is worth the effort and cost.

Trysha Galloway | 09/03/2025

Please see attachment, thank you.

Colleen Maher | 09/03/2025

As a living donor, I feel it is vital to have a database with long term followup data on donors. I believe it would help undecided potential donors make an informed decision. I would have liked to know data >2 years out at time of my donation, and even now am relying on social media to connect with other donors to hear their stats. I would like to see this data centralized and accessible.

Anonymous | 09/03/2025

Many potential donors and their family members ask about long term data on living donation. We educate donors, but sometimes donors to back out from lack of long-term data. It is important data for transplant professionals to have as well when caring for this group of patients.

Anonymous | 09/02/2025

The data collection on living donors should include current and retrospective data from living donors. There are many of us who are decades post transplant and there is much to be learned from including us in studies.

Anonymous | 08/31/2025

Strongly support. I was a living donor candidate who passed all of the screening and ultimately opted out of donation owing to the lack of long term data available. I did not feel the “informed consent” was truly informed and that gave me too much pause to feel fully at ease with moving forward. This would be a start to changing much of that.

Kristen Hovey | 08/30/2025

I donated 66% of my liver to a stranger in Texas. I live in Iowa. I flew down there for the transplant and got to meet him the day before. They followed up with me for two years but that only included sending them my blood work. The only way I knew my liver had fully regenerated is because I got tested a year later to donate one of my kidneys. It would be nice if a living donor could be followed for at least a minimum of five years.

Anonymous | 08/30/2025

I think this would be great! Many people wonder about what life looks like beyond 2 years.

Jullie Hoggan | 08/28/2025

Potential donors, and those educating them, should have access to as much data as possible about living donation so I support this data collection.

Anonymous | 08/28/2025

We need standardadized data collection for DCD donors such as GCS, reflexes, ability to breathe on their own, CPAP trial and etc to help guide us on which donors will expire and who wont

Terri Milton | 08/27/2025

There needs to be standardization and effective communication. So yes. I agree.

Nancy Marlin | 08/27/2025

When I was searching for a living kidney donor, not surprisingly potential candidates asked me about the long-term effects of living donation. I shared the available research, but with the limitations that the studies were often of limited duration, single-center or lacked an appropriate control group. This important data collection project will, in the long-term, answer such questions as well as provide valuable information about barriers to living donation.

Anonymous | 08/27/2025

Support

Anonymous | 08/27/2025

Strongly Support

Susan Rackley | 08/27/2025

Living donors and their data need to be available to anyone who needs it.