Condition
Bardet-Biedl Syndrome clinical trials and research
As of November 12, 2026, Find a Trial lists 6 Bardet-Biedl Syndrome clinical trials that are recruiting, at sites in 4 countries (most in United States (3), France (1), Germany (1)). By phase: Phase 4 (1). Every study is explained in plain English. Data from ClinicalTrials.gov and NIH RePORTER, updated November 12, 2026.
- 6Clinical trials
- 4Countries
Newest Bardet-Biedl Syndrome clinical trials
| Study | Phase | Where | Status | Registered |
|---|---|---|---|---|
| Setmelanotide in BBS and related genetic obesity: real-world effects | Phase 4 | Essen | Recruiting | Jun 29, 2026 |
| Observing the health management of patients with rare genetic syndromes | — | Rotterdam, South Holland | Recruiting | Jul 9, 2020 |
| Cohort for Bardet-Biedl and Alström Syndromes | — | Strasbourg | Recruiting | Jul 8, 2020 |
| Registry for inherited retinal degenerative diseases | — | Columbia, Maryland | Recruiting | May 6, 2015 |
| Registry for individuals with Bardet-Biedl Syndrome | — | Marshfield, Wisconsin | Recruiting | Dec 31, 2014 |
| Resource for Hepato/Renal Fibrocystic Diseases | — | Washington D.C., District of Columbia and 5 other locations | Recruiting | Jul 26, 2011 |
All recruiting trials (6)
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Setmelanotide in BBS and related genetic obesity: real-world effects
This study tests how well Setmelanotide works and is tolerated in people with Bardet-Biedl syndrome or similar genetic obesity conditions in routine clinical care.
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Observing the health management of patients with rare genetic syndromes
This study looks at how patients with rare genetic syndromes like Prader-Willi and Klinefelter manage their health as they move from children's care to adult care to see what support they need.
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Cohort for Bardet-Biedl and Alström Syndromes
This study is trying to learn more about Bardet-Biedl and Alström Syndromes by collecting health information from both kids and adults to see how these rare conditions affect their lives over time.
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Registry for inherited retinal degenerative diseases
This study is creating a registry for people with rare inherited eye diseases to help track their health and experiences over time, making it easier to understand these conditions and support research.
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Registry for individuals with Bardet-Biedl Syndrome
This study is creating a registry to gather health information from people with Bardet-Biedl Syndrome to better understand the condition and help develop new treatments.
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Resource for Hepato/Renal Fibrocystic Diseases
This study is trying to collect detailed health and genetic information from people with hepato/renal fibrocystic diseases to improve understanding and treatment options for these conditions.
Related topics
Quick answers
How many Bardet-Biedl Syndrome clinical trials are recruiting right now?
6, as of November 12, 2026. We update this list each time we refresh our data from ClinicalTrials.gov.
Where are these trials running?
In 4 countries. The most sites are in United States (3 trials), France (1 trial), Germany (1 trial), Netherlands (1 trial). Each study page lists its sites and which ones are recruiting.
What phases are they in?
Phase 4: 1. Trials with no phase listed are usually device, behavioural or observational studies.
How do I join one?
Open a study, check the "Is this trial a fit for you?" section, then contact the study team listed on the page. They will ask a few screening questions. Asking is free and does not commit you to anything. Talk it over with your doctor first.
Find the studies that fit you
A list is a starting point. Tell us your situation in your own words and we'll rank the studies that match and explain why. It's free and needs no account.