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Genetic Determinants of Kidney Disease in People of African Ancestry With HIV

The Gen-Africa study explores why people of African heritage with HIV in the UK face a higher risk of kidney disease. Researchers collected health information, blood, and urine samples from over 3,000 participants. Initial findings suggest that specific genetic factors, like changes in the APOL1 gene and sickle cell trait, play a role in this increased risk. The study also investigates how other health conditions such as diabetes, obesity, and heart problems, along with HIV treatments, might contribute. By understanding these connections, the study hopes to improve how kidney disease is predicted and managed in this group.

At a glance

Status
Active not recruiting
Sponsor
King's College Hospital NHS Trust
Enrolment target
3,029
Start
01 May 2018
Estimated completion
31 Jan 2030

What is this study about?

This study, called Gen-Africa, was set up because kidney disease is unfortunately more common in people of African heritage who are also living with HIV in the UK. Researchers wanted to understand why this is and if there are specific reasons or factors that increase this risk. They looked at things that are already known to affect kidney health, like diabetes, obesity, and heart conditions, as well as factors related to HIV itself, such as how long someone has had HIV or the medicines they take.

Over 3,000 people took part, sharing their health information, and providing blood and urine samples. This allowed scientists to look closer at their genes. They found that certain genes, like one called APOL1, and having sickle cell trait (which means carrying one copy of the gene for sickle cell disease), seem to be linked to a higher chance of developing kidney disease. This is an important discovery because it helps us understand who might be at greater risk and why.

Going forward, the study aims to gather even more information over time. This ongoing research will help them piece together a more complete picture of how genetics, other health conditions, and HIV treatment all interact to affect kidney health. The ultimate goal is to use this knowledge to help doctors identify people at risk earlier and potentially develop better ways to prevent or treat kidney problems in this specific patient group.

Key takeaways

  • Kidney disease is a significant concern for people of African heritage living with HIV in the UK.
  • Genetic factors, like the APOL1 gene and sickle cell trait, appear to increase the risk of kidney disease.
  • The study aims to understand how genetics, HIV, and other health conditions affect kidney health over time.
  • Information from over 3,000 participants has been collected, including health details and biological samples.
  • This research helps improve understanding and potentially screening for kidney disease in this specific population.

Who may be eligible?

To be part of this study, you must have been diagnosed with HIV. You also need to describe yourself as being of Black ethnicity.

If you meet these two main requirements and are willing to take part, you would have been asked for your agreement to join the study.

There were no specific reasons that would have immediately stopped someone from taking part, aside from not meeting the main inclusion criteria.

Quick self-check
  • Are you living with HIV?
  • Do you identify as Black ethnicity?
  • Did you give your informed consent to participate?
  • Were you willing to provide blood and urine samples?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you took part in this study, you agreed to provide a blood sample and a urine sample. You also had your weight, height, and blood pressure measured. Additionally, you filled out a short questionnaire about your health and lifestyle.

Researchers also collected information about your HIV treatment history and other health details from your medical records. This included information about your immune system measurements (CD4 count), how much virus was in your blood (HIV viral load), whether you had hepatitis B or C, and details about your kidney function.

For some people, their records were also linked to a larger long-term study called the UK Collaborative HIV Cohort. This allows researchers to gather more health information over time without needing you to make extra visits. The study itself doesn't involve changes to your medication or additional medical appointments beyond the initial collection of samples and information.

Potential risks and benefits

Taking part in research studies like this helps advance our understanding of health conditions, which can ultimately lead to better care for others in the future. While there are no direct medical benefits to you from participating, your contribution is valuable. The risks involved are minimal, mainly related to the discomfort of a blood test. You always have the right to withdraw your consent to participate at any time, without it affecting your medical care.

Locations (1)

  • King's College Hospital NHS Foundation Trust
    London, United Kingdom

Common questions

Why is this study important?

This study helps us understand why kidney disease is more common in people of African heritage living with HIV, and if certain genes play a role. This knowledge can improve how doctors identify and help people at risk.

What genetic factors did the study find?

The study found that specific changes in a gene called APOL1 and having sickle cell trait (carrying one gene for sickle cell disease) are linked to a higher risk of kidney disease in this group.

Will my personal information be kept private?

Yes, all data and samples collected are stored securely with special study identification numbers, not your name. Strict rules are followed to protect your privacy and comply with data protection laws.

What is 'chronic kidney disease'?

Chronic kidney disease (CKD) means that your kidneys are damaged and can't filter blood as well as they should. Over time, this can lead to serious health problems.

What is 'sickle cell trait'?

Sickle cell trait means you carry one copy of the gene for sickle cell disease, but you usually don't have the full disease yourself. It's common in people of African, Mediterranean, and South Asian descent.

How to find out more

Always speak to your GP or specialist before deciding to take part in a study.

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