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Clinical Trial 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 ALström 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


Clinical Trial Description

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Study Design


Related Conditions & MeSH terms


NCT number NCT04461444
Study type Interventional
Source University Hospital, Strasbourg, France
Contact Hélène DOLFFUS
Phone +33.3.69.55.19.55
Email helene.dollfus@chru-strasbourg.fr
Status Recruiting
Phase N/A
Start date June 16, 2020
Completion date February 2035

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