Global registry for genetic obesity
International Genetic Obesity Registry
This registry collects health and genetic information from people with genetically confirmed or early-onset severe obesity to see if different genes relate to symptoms, complications, and treatment responses.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 5000 (estimated) |
| Sex | All |
| Sponsor | University of Ulm Academic / other |
| Locations | 1 site (Ulm) |
| Trial ID | NCT07296900 on ClinicalTrials.gov |
What this trial studies
The International Genetic Obesity Registry is an observational program that gathers clinical, genetic, and routine outpatient data from patients with monogenic or early-onset severe obesity. Participants provide consent and allow their medical records, genetic test results, and follow-up information to be entered into a centralized database. No experimental treatments are given; the registry documents natural history, comorbidities, and responses to standard therapies. The aggregated data aim to support research, inform clinical care, and help tailor management to specific genetic subtypes.
Who should consider this trial
Good fit: Ideal candidates are people with genetically confirmed genetic obesity (ACMG class 3-5 variants linked to obesity) or those with early-onset severe obesity who have had genetic testing, and who can provide informed consent (or whose guardians can consent).
Not a fit: People without genetic confirmation and those whose obesity is clearly non-genetic, as well as individuals unable to provide informed consent, are unlikely to benefit directly from this registry.
Why it matters
Potential benefit: If successful, the registry could lead to more accurate diagnosis, better subtype-specific guidance, and more personalized treatment options for people with genetic forms of obesity.
How similar studies have performed: Registries for rare genetic disorders have previously improved understanding of natural history and care, so this approach is established rather than novel.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients with * genetically confirmed genetic obesity (ACMG classification 3-5, associated with obesity) and/or * early onset severe obesity (BMI ≥ 120% 95th percentile or ≥ 35 kg/m2 before 5 years of age) if genetic testing was performed * Capable of understanding the aims of the protocol and to provide informed consent (for children and chronically incapacitated individuals, consent is given by their legal guardians) Exclusion Criteria: * Not capable of understanding the aims of the protocol and to provide informed consent
Where this trial is running
Ulm
- Ulm University Clinic — Ulm, Germany (Recruiting)
Study contacts
- Study coordinator: Julia von Schnurbein, PD Dr.
- Email: julia.vonschnurbein@uniklinik-ulm.de
- Phone: 0049 731 500 57401
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.