We want to hear from people involved with kidney transplantation.
Please learn about our project and consider participating.
The purpose of our project is to learn more about attitudes toward ApoL1 genetic testing. ApoL1 is a gene in your body. Everyone gets 2 copies of the gene: one from their mother and one from their father. Some forms of this gene are found in certain individuals with African ancestry and can give people an increased risk of kidney disease.
Some transplant centers are testing Black living kidney donors for the ApoL1 gene. They want to improve transplants for Black people. ApoL1 testing raises questions for decision makers about who to test, how to use the test results, and who to share the results with. Transplant center staff, donors, people who need kidneys, and donor family members are all stakeholders. We want your opinions on genetic testing of Black living kidney donors for the ApoL1 gene.
This research study is affiliated with the ApoL1 Long-term Kidney Transplantation Outcomes Consortium, also known as APOLLO. APOLLO’s purpose is to learn about various aspects of kidney donation and kidney transplantation, including the outcomes of donors and recipients. More information on APOLLO can be found at this link: https://theapollonetwork.org/
- Black living kidney donors
- Black living donor candidates
- Black people who were evaluated as possible living kidney donors but were unable to donate
- Recipients of a Black living donor’s kidney
- Black kidney transplant recipients of a deceased or living donors
- Black people with chronic kidney disease
- Black people who are on the kidney transplant waitlist
- The blood relatives of patients who are on dialysis
- Family members of a Black deceased kidney donor
- Kidney care or transplant professionals
- The survey will take approximately 30 minutes of your time.
- You will receive $20 for completing the “ApoL1 Clinical Practices Survey” (ACPS).
- You will receive another $20 for completing the “Attitudes Toward Genomics and Precision Medicine Survey” (AGPM).
- You will receive a link to the second survey after completing the first survey.
- You will get a $5 bonus payment for completing both surveys.
- All participants will also be entered into a raffle to win one of three bonus payments of $300, $200, or $100.
“This project could help researchers understand health disparities and improve transplant policies for Black donors and recipients.”
— Melody S. Goodman, PhD, MS, Project Biostatistician and Community Advisory Board Chair
“Kidney disease affects Black people in the US more than other groups partly because of certain forms of the ApoL1 gene. We want to learn about Black people’s attitudes and experiences with genetic testing related to kidney disease to improve treatment.”
— Sumit Mohan, MD, MPH nephrologist, project co-principal investigator and liaison to the APOLLO Steering Committee
Members of the APOLLO Community Advisory Council
Frequently Asked Questions
Thank you for participating. Please only take the survey once.
Some forms of the ApoL1 gene can cause higher rates of kidney disease. These forms of the gene are almost exclusively found in Black and African American people.
Yes. Participants can choose to be paid with either an Amazon.com gift card or a check.
We need your social security number if you want to receive a check payment. If you do not provide your social security number, you will receive an Amazon.com gift card.
