CKD Africa Genes – Patient Information
- How people can be affected
People of African or Afro-Caribbean ancestry are five times more likely to have kidney disease. They also develop kidney failure when they are about ten years younger than white people. The connection between ethnicity and kidney disease is complex. There have been some new scientific discoveries which may help us to begin to understand the cause of this problem and develop treatments, but much more work is needed.
For example, a gene pattern (APOL1-G1/G2 alleles) has been found which is common in people of African and Afro Caribbean ancestry. We think this gene pattern prevents some forms of sleeping sickness which is why so many people of West African and Afro Caribbean ancestry have these gene patterns. This gene pattern may make it more likely for some people to develop kidney disease (including particular type of disease: Focal Segmental Glomerulosclerosis (FSGS), human immunodeficiency virus associated glomerulopathy (HIVAN) in people with HIV, hypertensive associated kidney disease). We do not completely understand why some people with these gene patterns develop kidney disease while others do not.
Another example of kidney disease with a genetic cause in people of African and Afro Caribbean ancestry is sickle cell disease causing kidney problems (Sickle cell nephropathy). Sickle cell disease much more common in people of African and Afro Caribbean ancestry because having the genes which cause the condition are protective against malaria infection. We need to find better ways to treat sickle cell nephropathy in the UK and to identify people with early disease that can be prevented from getting worse.
High blood pressure causing kidney disease is also is much more common in people of African and Afro Caribbean ancestry, and many genetic factors are likely. We need to understand much more about how blood pressure affects the kidneys of people of African or Afro-Caribbean ancestry so that we can prevent more people getting failure in the future.
- What can be done about it?
In the past, not many people of African or Afro-Caribbean ancestry have taken part in kidney studies so it has been difficult to answer these questions. RaDaR CKD-Africa-Genes will allow us to find lots of people African or Afro-Caribbean ancestry with CKD living in the UK to help us find out more about this problem. One day we hope to reduce the number of people of African or Afro-Caribbean ancestry who have kidney disease by making their care more focussed on their needs and finding new treatments.
- Who is able to take part?
People of African or Afro-Caribbean ancestry with:
Sickle Cell Kidney Disease: Known Sickle Cell disease with reduced kidney function, and/or blood or protein in urine with no other cause for kidney disease identified.
Suspected or confirmed APOL1 disease including: Focal segmental glomerulosclerosis on renal biopsy; Non-diabetic and non-immunological kidney disease with no other confirmed cause (e.g. polycystic kidneys)
Suspected or confirmed hypertensive kidney disease
End stage kidney disease of unknown cause
- What will happen if I take part?
You will be asked to sign a consent form to give permission for us to collect and use your information. We will ask for details about your country of birth and that of your parents and grand-parents (if known). We will also collect information from your medical records about your kidney condition.
All information about you is kept confidential at all times. Please see https://rarerenal.org/radar-registry/privacy-notice/ for more information about how your data will be stored, accessed and processed.
- New Research
There are some new treatments being developed for people with kidney disease which are thought to be caused by different genetic conditions. You can ask your doctor to contact the Rare Disease Group for more information.
You may also be contacted about other projects which aim to understand better ways of caring for people genetic conditions related to African or Afro-Caribbean ancestry.
Written by the Africa-CKD Rare Disease Group