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NCT Number: NCT07296900

International Genetic Obesity Registry

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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Key information

Conditions

Genetic Obesity

Sex eligibility

All sexes

Study type

Observational

Primary location

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

  1. Change of somatic comorbidities under standard treatment

    Time frame: every 5 years for 50 years

    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].

  2. Change of somatic comorbidities under standard treatment

    Time frame: every 5 years for 50 years

    Number of participants with abnormal laboratory test results. Laboratory measurements include. HbA1c [%], blood lipids [mmol/l], insulin [mU/l], glucose [mg/dl]

Secondary outcomes

  1. genotype-phenotype correlation

    Time frame: every 5 years for 50 years

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

  2. Age at onset for comorbidities

    Time frame: every 5 years for 50 years

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

  3. Age at death

    Time frame: at year 20 after study start

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

Study contacts

Contact information is provided by the study sponsor or research team.

Julia von Schnurbein, PD Dr.

CONTACT

[email protected]

0049 731 500 57401

Sponsors and collaborators

Lead sponsor

University of Ulm

Other

Registry information

Acronym: iGO Registry

Important dates

Study start
2025
Primary completion
2075
Study completion
2075
First posted
Dec 22, 2025
Registry last updated
Dec 22, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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