APOL1 Genetic Testing Program for Living Donors

Launched by NORTHWESTERN UNIVERSITY · May 27, 2021

Keywords

ClinConnect Summary

This clinical trial is studying a new program to help African American living kidney donors understand their genetic risks better before donating. Research has shown that African American donors have a higher chance of developing serious kidney problems after donation due to a specific genetic factor called APOL1. The goal of this study is to provide these donors with culturally sensitive information and support through a chatbot named "Gia" and enhanced counseling. By doing this, the trial aims to reduce confusion and anxiety about the donation process, helping potential donors make informed decisions.

To participate in this trial, you need to be an adult (18 years or older) who identifies as African American or has African ancestry. You should also be able to speak English and be mentally capable of understanding the information provided. Throughout the study, participants can expect to receive personalized guidance and support to help them feel more prepared and confident about their decision to donate. This trial is important because it will create a model for integrating genetic testing into kidney transplant programs, ensuring that potential donors receive the information they need in a culturally respectful way.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Living kidney donor candidates who identify as African American/Black, Jamaican, Barbadian, Grenadian, Brazilian from Salvador Trinidadian, Panamanian, Honduran, Haitian, Garifunan, Palenque, Guyanese, Dominican, Peruvian, Belizean, and Native American, or state that they have African ancestry or are aware of having biologically-related family with African ancestry
• • Living kidney donor candidates may be directed or non-directed donors
• • Adults (ages 18+)
• • English-speaking
• • Cognitively intact individuals
• • All genders
• Exclusion Criteria:
• • Individuals who do not identify as African American/Black and are not aware of having any biologically-related family with African ancestry and do not have African ancestry
• • Only African Americans and people of African ancestry will be included because APOL1 risk variants are predominantly found in African Americans and people who have African ancestry.
• • Pregnant women cannot be living kidney donors