@article{c81214e6af2248439c61cf296d361048,
title = "Factors enabling transplant program participation in the Scientific Registry of Transplant Recipients (SRTR) Living Donor Collective: A national survey",
abstract = "Background: The Scientific Registry of Transplant Recipients (SRTR) Living Donor Collective (LDC), the first effort to create a lifetime registry for living donor candidates in the United States, requires transplant programs to register donor candidates while the SRTR conducts follow-up. Methods: To better understand facilitators and barriers to program participation, we conducted a brief electronic survey of U.S. transplant program staff from October 26, 2021 to December 17, 2021. Results: We received 132 responses, with at least one response from 87 living donor programs (46 kidney programs, 33 kidney and liver programs, and eight liver programs alone). We found 86% of program representatives strongly agreed or agreed that funding adequate to cover the cost of data collection would facilitate LDC participation, 92% agreed or strongly agreed with importance of electronic data submission options, and 74% reported that elimination of requirements to submit duplicative pre-operative information to the Organ Procurement and Transplantation Network (OPTN) would be helpful. Other potentially enabling factors include reduction in duration of OPTN postdonation follow-up requirements, ease-of-use, protection from data use for regulation, adequate data security, and equity in data access. Conclusion: This survey identifies potential targets to strengthen participation in the effort to create a national living donor registry in the United States. Collaboration and investment to overcome barriers to LDC participation among transplant programs are vital to generate long-term data on living donation for donor candidates, donors, and patients in need of transplant.",
keywords = "SRTR, follow-up care, living kidney donors, registry, survey, United States, Humans, Tissue and Organ Procurement, Organ Transplantation, Living Donors, Transplant Recipients, Registries, Surveys and Questionnaires",
author = "Lentine, {Krista L.} and Dew, {Mary Amanda} and Huiling Xiao and Addie Wisniewski and Levan, {Macey L.} and {Al Ammary}, Fawaz and Asif Sharfuddin and Axelrod, {David A.} and Waterman, {Amy D.} and Bertram Kasiske",
note = "Funding Information: The authors thank: Survey respondents, including members of the American Society of Transplantation (AST) Living Donor COP (LDCOP), Kidney-Pancreas Community of Practice (KPCOP), Liver Intestine COP (LICOP), and Transplant Administrators and Quality management (TxAQM), and COP leadership for review of the survey instrument and sharing the survey link on professional listservs. Krista L. Lentine receives research funding related to living donation from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK, R01DK120551) and is also supported by the Mid-America Transplant/Jane A. Beckman Endowed Chair in Transplantation. Macey Levan receives research funding related to living donation from the NIDDK (R03DK132222). Fawaz Al Ammary receives research funding related to living donation from the NIDDK (K23DK129820). Funding Information: The authors thank: Survey respondents, including members of the American Society of Transplantation (AST) Living Donor COP (LDCOP), Kidney‐Pancreas Community of Practice (KPCOP), Liver Intestine COP (LICOP), and Transplant Administrators and Quality management (TxAQM), and COP leadership for review of the survey instrument and sharing the survey link on professional listservs. Krista L. Lentine receives research funding related to living donation from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK, R01DK120551) and is also supported by the Mid‐America Transplant/Jane A. Beckman Endowed Chair in Transplantation. Macey Levan receives research funding related to living donation from the NIDDK (R03DK132222). Fawaz Al Ammary receives research funding related to living donation from the NIDDK (K23DK129820). Publisher Copyright: {\textcopyright} 2023 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.",
year = "2023",
month = apr,
doi = "10.1111/ctr.14908",
language = "English (US)",
volume = "37",
pages = "e14908",
journal = "Clinical Transplantation",
issn = "0902-0063",
publisher = "Wiley",
number = "4",
}