COhort for Bardet-Bield Syndrome and Alstr m Syndrome for Translational Research Monocentric Interventional Study
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- STATUS
- Recruiting
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- End date
- Feb 5, 2035
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- participants needed
- 350
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- sponsor
- University Hospital, Strasbourg, France
Summary
ALMS and BBS syndromes are rare diseases with overlapping features of multiple sensory and metabolic impairments, including diabetes mellitus. There are to date no specific treatments available and limited information on the natural history of the diseases. the investigators aim to establish a French cohort for these diseases to improve patient care and assess the effect of actual therapies on quality of life.
The purpose of this study is to establish a cohort of Bardet-Bield syndrome (BBS) and ALstrm syndrome (ALMS) patients in order to formalize and address questions concerning the in-depth natural clinical and biological history of the disease on the long term for a given patient, establish the impact on the quality of life of various clinical manifestations
Details
| Condition | Bardet-Biedl Syndrome, Alström Syndrome |
|---|---|
| Age | 1-100 years |
| Treatment | Skin biopsy |
| Clinical Study Identifier | NCT04461444 |
| Sponsor | University Hospital, Strasbourg, France |
| Last Modified on | 19 February 2024 |
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