Predictive Determinants of Nephrotic Syndrome Remission in Patients With At-risk Polymorphism of APOL1
This is a retrospective cohort study investigating nephrotic syndrome in patients who carry a high-risk variant of the APOL1 gene. Specifically, the study looks at two forms of nephrotic syndrome: minimal change disease (MCD) and focal segmental glomerulosclerosis (FSGS). The goal is to identify which patient characteristics and treatments are associated with achieving remission. Currently, it is not known what the best treatment approach is for patients with this genetic profile.
At a glance
What is this study about?
This study is about a kidney problem called nephrotic syndrome, which can happen in people who have certain changes in a gene called APOL1. The APOL1 gene helps make a protein in your body, and having specific versions of this gene can make your kidneys more likely to get sick, sometimes leading to serious kidney failure.
When someone has nephrotic syndrome, their kidneys leak too much protein into their urine. This can cause swelling in the body, especially in the legs and around the eyes, and other issues. For people with the APOL1 gene changes, it can be hard to predict how their nephrotic syndrome will progress. Some people get very sick quickly, while others recover well. This study aims to look closely at information from patients' medical records to understand what might lead to improvement or remission (when the condition gets better) in nephrotic syndrome. They're especially interested in whether steroid medications help and if they cause side effects.
The researchers hope to identify specific things – like certain medicines, other health conditions, or how the kidney looks under a microscope – that predict whether someone will get better. This information is important because new medicines for APOL1-related kidney disease are being developed. By better understanding how current treatments work and what helps people improve, doctors can better care for patients and help guide future research into these new therapies.
Key takeaways
- Study examines kidney disease (nephrotic syndrome) linked to the APOL1 gene.
- Researchers want to find out what helps patients get better.
- They are looking at past medical records; no new treatments are involved.
- The study aims to understand if steroid medicines are helpful and what their side effects are.
- Findings could improve future care for patients with this condition.
Who may be eligible?
This study is looking at medical records from adult patients, aged 18 or over.
To be included, patients must have been treated at one of six specific kidney clinics between January 2016 and June 2024. They must have had tests to confirm they have the 'at-risk' version of the APOL1 gene. They also need to have been diagnosed with nephrotic syndrome, which means high levels of protein in their urine shortly after a kidney biopsy. The biopsy must have shown specific kidney problems, like 'minimal change disease' or 'focal segmental hyalinosis lesions'.
Patients would not be included if their kidney biopsy showed certain other damage, or if they have said they don't want their medical information used for research. Since this is a study looking at past medical records, patients don't need to do anything new to participate.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you an adult (18 or older)?
- Did you receive care at certain kidney clinics between 2016 and 2024?
- Do you have the 'at-risk' APOL1 gene variation?
- Were you diagnosed with nephrotic syndrome (high protein in urine and low protein in blood) after a kidney biopsy?
- Did your kidney biopsy show specific conditions like 'minimal change disease' or 'focal segmental hyalinosis'?
What does participation involve?
This is a record-review study, meaning no new tests, visits, or medications are involved. Researchers will look at existing medical information, such as test results and treatment details, from patients who have already received care for nephrotic syndrome. There is no direct patient participation required.
Potential risks and benefits
Locations (3)
- Néphrologie & Dialyses department, Tenon HospitalVerified postcodeParis, France
- Assistance Publique - Hôpitaux de ParisUnverifiedParis, France
- King's College Hospital / King's College UniversityUnverifiedLondon, United Kingdom
Common questions
What is nephrotic syndrome?
It's a kidney problem where too much protein leaks from your blood into your urine, causing swelling in parts of your body.
What is the APOL1 gene?
It's a gene that, in some versions, can increase the risk of developing certain kidney diseases.
Will I have to take new medicines?
No, this study is looking back at records of treatments people have already received. No new medicines are given.
Will I need to go to extra appointments?
No, you won't need any extra visits or tests for this study. Researchers are just reviewing existing medical files.
How will my information be kept private?
The researchers will use anonymous information from patient records, meaning your name or other identifying details won't be linked to the data.
Does the participation in the study require an additional visit?From the study team
No, the study does not require any additional visit.
Does the participation in the study require additional exams (i.e. blood samples)?From the study team
No, the study does not require any additional exams.
How to find out more
Romain Brousse
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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