Genetic ObesityiGO RegistryNCT07296900
International Genetic Obesity Registry
An observational study of Genetic Obesity, run by University of Ulm at 1 site in Germany.
Trial summary
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. Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Genetic Obesity
- How many people
- 5,000 participants
- Where
- 1 siteGermany
- Study dates
- 17 Nov 2025to Nov 2075
- How long will I take part?
- 50 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Study population: Multi-Center
Who may be able to join
- 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)
Who cannot join
- Not capable of understanding the aims of the protocol and to provide informed consent
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
Germany1 site, 1 recruiting
- Recruiting
Ulm University Clinic
Ulm
Julia von Schnurbein, PD Dr., 0049 731 500 57401, julia.vonschnurbein@uniklinik-ulm.de
About this study
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.
- Conditions
- Genetic Obesity
- Keywords
- genetic obesity, patient registry, monogenic obesity, natural history
What is being measured
The primary outcome is the main question the study is designed to answer.
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].
Measured: 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]
Measured: every 5 years for 50 years
Secondary outcomes (3)
genotype-phenotype correlation
molecular genetic results will be compared to results from standardized physical examination, laboratory and instrument based tests
Measured: every 5 years for 50 years
Age at onset for comorbidities
comorbidities will be assessed via standard physical examination, laboratory and instrument based tests
Measured: every 5 years for 50 years
Age at death
patients are followed regulary, age at death (years) will be documented
Measured: at year 20 after study start
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted22 Dec 2025
- Study start17 Nov 2025
- Primary completionNov 2075 (estimated)
- Study completionNov 2075 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Genetic ObesityStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 5,000 participants (estimated)
- Target duration
- 50 Years
Sponsor and investigators
- Lead sponsor
- University of Ulm
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Julia von Schnurbein, University of Ulm
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07296900
- Sponsor's protocol ID
- iGO Registry
- Acronym
- iGO Registry
- Status last verified
- Dec 2025
- First submitted
- 25 Nov 2025
- Last updated
- 22 Dec 2025
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Yes: Researches participating in the iGO registry and third parties independently can request to perform research with the data.
Study at a glance
From the registry record, last updated by the sponsor on 22 Dec 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- International Genetic Obesity Registry
- ClinicalTrials.gov ID
- NCT07296900
- Acronym / sponsor ID
- iGO Registry / iGO Registry
- Conditions
- Genetic Obesity
- Keywords
- genetic obesity, patient registry, monogenic obesity, natural history
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 5,000 participants (estimated)
- Lead sponsor
- University of UlmUniversity, hospital or other
- Study start
- 17 Nov 2025 (actual)
- Primary completion
- Nov 2075 (estimated)
- Study completion
- Nov 2075 (estimated)
- First posted
- 22 Dec 2025 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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 design
- Observational model
- Cohort
- Time perspective
- Prospective
- Target follow-up
- 50 Years
Who may qualify
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- Study population
- Multi-Center
Key inclusion criteria (4 listed)
- 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)
Key exclusion criteria (1 listed)
- Not capable of understanding the aims of the protocol and to provide informed consent
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
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].
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]
3 secondary outcomes
genotype-phenotype correlation
Time frame: every 5 years for 50 years
Age at onset for comorbidities
Time frame: every 5 years for 50 years
Age at death
Time frame: at year 20 after study start
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 22 Dec 2025.
- Individual participant dataSharing planned: Yes. Researches participating in the iGO registry and third parties independently can request to perform research with the data.
Related trials for Genetic Obesity
Not yet recruitingObservational study
A Natural History of Genetic and Environmental Predictors of Pubertal Timing Among Youth With Obesity
Obesity
RecruitingObservational study
Characterization of Patients With Uncommon Presentations and/or Uncommon Diseases Associated With the Cardiovascular System
Metabolic Disease, Obesity
RecruitingPhase 1
Liver Adiposity Effects on Pediatric Statin
Cholesterol; Lipidosis
Not yet recruiting
Prospective Evaluation of Recombinant Pbserum Plus® and Pbserum HA 2.0® in Aesthetic and Regenerative Bioremodeling
Skin Laxity, Localized Adiposity
RecruitingObservational study
Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford
Rare Disorders, Undiagnosed Disorders
Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Genetic Obesity, run by University of Ulm at 1 site in Germany.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 22 Dec 2025. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Germany. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Julia von Schnurbein, PD Dr. (0049 731 500 57401, julia.vonschnurbein@uniklinik-ulm.de), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Change of somatic comorbidities under standard treatment (time frame: every 5 years for 50 years). The study lists 2 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 22 Dec 2025.