Integrating a Culturally Competent APOL1 Genetic Testing Program Into Living Donor Evaluation

 

About this study

 

 

 Why is the APOL1 study important? 

    • People who are Black or African American have high rates of kidney disease. Black or African American living kidney donors have a higher chance of getting kidney failure after donating than white living donors.
    • Genetic factors, in addition to systemic and environmental factors, may be part of the reason for this disparity.
    • We are doing a research study about how doctors talk about genetic testing to potential living donors of African ancestry.
    • Potential living donors sometimes get genetic tests to see if there are health concerns about donating.
    • This research aims to learn how doctors talk about genetic testing to people who are thinking about donating.
    • This study may show transplant programs in the United States how to better inform potential donors of African ancestry about donation.
    • This study aims to improve informed decision making for potential living donors of African ancestry in the future.

Who are the APOL1 study participants?

The APOL1 study participants are people who identify as African American and/or Black, Jamaican, Barbadian, Grenadian, Brazilian from Salvador, Trinidadian, Panamanian, Honduran, Haitian, Garifunan, Palenque, Guyanese, Dominican, Peruvian, Belizean, and Native American, or are aware of having biologically-related family from African ancestry or have African ancestry. All participants are adults, age 18 years or older. Participants in the focus groups are community members, and participants in the APOL1 clinical trial are living kidney donor candidates.

 

Study Locations for Participant Recruitment:

  • Northwestern University in Chicago, IL 
  • Georgetown University in Washington, DC

 

Funding:

This work is funded by the NIH/National Institute of Diabetes and Digestive and Kidney Diseases (R01DK128207, PI: Gordon), and the Dixon Translational Research Innovation Award (PI: Gordon).

 

 

 Clinical Trials.gov registration number: NCT04910867 (Part 1)

 Clinical Trials.gov registration number: NCT04999436 (Part 2)

Integrating a Culturally Competent APOL1 Genetic Testing Program Into Living Donor Evaluation

About this study

Why is the APOL1 study important?

– People who are Black or African American have high rates of kidney disease. Black or African American living kidney donors have a higher chance of getting kidney failure after donating than white living donors.

– Genetic factors, in addition to systemic environmal factors, may be part of the reason for this disparity.

-We are doing a research study about how doctors talk about genetic testing to potential living donors of African ancestry.

-Potential living donors sometimes get genetic tests to see if there are  health concerns about donating.

-This research aims to learn how doctors talk about genetic testing to people who are thinking about donating.

-This study may show transplant programs in the United States how to better inform potential donors of African ancestry about donation.

-This study aims to improve informed decision making for potential living donors of African ancestry in the future.

Who are the APOL1 study participants?

The APOL1 study participants are people who identify as African American and/or Black, Jamaican, Barbadian, Grenadian, Brazilian from Salvador, Trinidadian, Panamanian, Honduran, Haitian, Garifunan, Palenque, Guyanese, Dominican, Peruvian, Belizean, and Native American, or are aware of having biologically-related family from African ancestry or have African ancestry. All participants are adults, age 18 years or older. Participants in the focus groups are community members, and participants in the APOL1 clinical trial are living kidney donor candidates.

Study Locations

  • Northwestern University in Chicago, IL 

  • Georgetown University in Washington, DC

Funding

This work is funded by the NIH/National Institute of Diabetes and Digestive and Kidney Diseases (R01DK128207, PI: Gordon), and the Dixon Translational Research Innovation Award (PI: Gordon).

ClinicalTrials.gov

ClinicalTrials.gov registration number: NCT04910867 (Part 1)

 

 Clinical Trials.gov registration number: NCT04999436 (Part 2)