International Genetic Obesity Registry

University of Ulm5,000 enrolled

Overview

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.

Study Type

OBSERVATIONAL

Enrollment

5,000

Conditions

Genetic Obesity

Eligibility

Sex: ALL

Medical Language ↔ Plain English

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

Outcomes

Primary Outcomes

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 \[bpm\].

Time frame: 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 \[mg/dl\]

Time frame: every 5 years for 50 years

Secondary Outcomes

genotype-phenotype correlation

molecular genetic results will be compared to results from standardized physical examination, laboratory and instrument based tests

Time frame: every 5 years for 50 years

Age at onset for comorbidities

comorbidities will be assessed via standard physical examination, laboratory and instrument based tests

Time frame: every 5 years for 50 years

Age at death

patients are followed regulary, age at death (years) will be documented

Time frame: at year 20 after study start

International Genetic Obesity Registry

Overview

Conditions

Eligibility

Locations (1)

Outcomes

Primary Outcomes

Secondary Outcomes

Central Contacts