About this trial
Bardet-Biedl syndrome (BBS) and other rare disorders associated with impairment of the melanocortin-4 receptor (MC4R) pathway are characterized by severe early-onset obesity, hyperphagia, and substantial morbidity. Setmelanotide, an MC4R agonist, is approved in Europe for selected genetic obesity disorders and reimbursed in Germany for eligible patients. This study aims to evaluate the effectiveness, safety, treatment persistence, metabolic outcomes, and patient-reported outcomes of Setmelanotide under real-world conditions. The registry is designed to allow future inclusion of additional MC4R agonists as they become approved and clinically available. The study will primarily be conducted at University Hospital Essen and will collect longitudinal routine clinical data from pediatric and adult patients receiving MC4R agonist therapy according to approved indications.
Eligibility criteria
Qualifiers
clinical phenotype corresponding to Bardet-Biedl Syndrome
genetic testing with notable finding
Disqualifiers
patients younger than the age approved for treatment with setmelanotide
Trial design
Treatments tested in this trial
- Setmelanotide
Treatment groups
Sponsors and collaborators
Tom Hühne
Lead sponsor
University Hospital, Essen
Sponsor institution
Rhythm Pharmaceuticals, Inc.
Collaborator