Goals of CARE Registry:
- To engage the community and increase awareness about kidney disease and APOL1.
- To provide free screening of self-identified Black adults for APOL1-associated kidney disease (hypertension-associated kidney disease or FSGS): by confirming:
- Presence of protein in the urine
- Reduced kidney function
- Presence of high risk APOL1 genotype (G1G1, G2G2, G1G2)
- To offer eligible CARE participants opportunity to enroll in a clinical trial of treatment of APOL1-associated kidney disease.
Number of people to be screened: 5000
YOU CAN PARTICIPATE IN THE
CARE REGISTRY IF YOU:
- Are African American or Black
- Are Between 18 – 70 years old
- Do not have diabetes
- Do not have history of solid organ transplant
- Are not currently on dialysis
- Have not had a stroke or heart attack within the past 6 months
WHAT TO EXPECT WHEN YOU ENROLL IN THE CARE REGISTRY
- Participants will come to a 1 hour single visit and give a sample of
saliva, urine and possibly two table spoons of blood.
- Participants will receive a gift card.
- The results of your urine test, blood test, and APOL1 gene test will be kept confidential and will be provided to you freely upon request.
If you are good fit for the JUSTICE clinical trial, you will be invited to enroll.
Together, we can help find a cure for kidney disease caused by the changed APOL1 gene.
Right now, there is no treatment for APOL1
Right now, there is no treatment for APOL1-mediated kidney disease, and screening for this gene change is not widely available. By joining the CARE registry, you can learn if you have the changed APOL1 gene. IF you do, you may have the opportunity to join the JUSTICE trial, and help find a treatment.