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Genetic obesity results from changes in specific genes that affect appetite regulation, metabolism, and fat storage. Its severity and associated health issues vary depending on the genetic cause. In some cases, hormonal imbalances, developmental delays, or other complications may also occur. Identifying the genetic cause is essential for personalized treatment and understanding potential symptoms.
As genetic obesity is rare, specialists often encounter few patients with diverse genetic backgrounds and clinical features. Therefore, collecting global data is crucial to improve our understanding of the condition's progression, complications, and treatment responses for each genetic subtype.
To support this, the International Genetic Obesity Registry (iGO Registry) has been established to gather detailed patient information on genetic obesity. This registry will help advance research and improve clinical care for affected individuals. It will collect data from routine outpatient visits, focusing on relevant diagnostic and treatment information on an international level.
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| Measure | Description | Time Frame |
|---|---|---|
| Change of somatic comorbidities under standard treatment | Number of participants with abnormal physical examination findings under standard treatment. Physical examinations include: Body weight [kg], body height [cm], blood pressure [mmHg], heart rate [bpm]. | every 5 years for 50 years |
| Change of somatic comorbidities under standard treatment | Number of participants with abnormal laboratory test results. Laboratory measurements include. HbA1c [%], blood lipids [mmol/l], insulin [mU/l], glucose [mg/dl] | every 5 years for 50 years |
| Measure | Description | Time Frame |
|---|---|---|
| genotype-phenotype correlation | molecular genetic results will be compared to results from standardized physical examination, laboratory and instrument based tests | every 5 years for 50 years |
| Age at onset for comorbidities |
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Inclusion Criteria:
Patients with
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:
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Multi-Center
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Julia von Schnurbein, PD Dr. | Contact | 0049 731 500 57401 | julia.vonschnurbein@uniklinik-ulm.de |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Ulm University Clinic | Recruiting | Ulm | Germany |
Researches participating in the iGO registry and third parties independently can request to perform research with the data.
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comorbidities will be assessed via standard physical examination, laboratory and instrument based tests
| every 5 years for 50 years |
| Age at death | patients are followed regulary, age at death (years) will be documented | at year 20 after study start |