International Genetic Obesity Registry (iGO Registry)

December 8, 2025 updated by: Julia von Schnurbein, University of Ulm

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 Overview

Status

Recruiting

Conditions

Study Type

Observational

Enrollment (Estimated)

5000

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Locations

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Child
  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Sampling Method

Non-Probability Sample

Study Population

Multi-Center

Description

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

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
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].
every 5 years for 50 years
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]
every 5 years for 50 years

Secondary Outcome Measures

Outcome Measure
Measure Description
Time Frame
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
every 5 years for 50 years
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
every 5 years for 50 years
Age at death
Time Frame: at year 20 after study start
patients are followed regulary, age at death (years) will be documented
at year 20 after study start

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

University of Ulm

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

November 17, 2025

Primary Completion (Estimated)

November 1, 2075

Study Completion (Estimated)

November 1, 2075

Study Registration Dates

First Submitted

November 25, 2025

First Submitted That Met QC Criteria

December 8, 2025

First Posted (Actual)

December 22, 2025

Study Record Updates

Last Update Posted (Actual)

December 22, 2025

Last Update Submitted That Met QC Criteria

December 8, 2025

Last Verified

December 1, 2025

More Information

Terms related to this study

Keywords

Other Study ID Numbers

  • iGO Registry

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

YES

IPD Plan Description

Researches participating in the iGO registry and third parties independently can request to perform research with the data.

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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