RecruitingNot Applicable

IDMet (RaDiCo Cohort) (RaDiCo-IDMet)

France2,000 participantsStarted 2017-03-10

Plain-language summary

The goal of this observational study is to describe the natural history of imprinting disorders (IDs) according to their metabolic profile in all patients (adults and children) affected with an ID regardless of the severity of the disease, with a molecular characterization, with a signed informed consent for all subjects, followed in one partner's center. The main questions it aims to answer are: * Can we identify common metabolic profiles for all imprinted diseases? * Which imprinting disorders have an impact on the metabolic profiles of IDs? * Which are the metabolic risks associated to IDs? * Can we use the metabolic profiles for the clinical classification and prognosis of IDs? * Are there common therapeutic approaches for all IDs?

Who can participate

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Patients (adults and children) affected with an ID regardless of the severity of the disease * A confirmed diagnosis of ID (based on molecular diagnosis) * A signed informed consent for adults or signed informed consent of parents/guardians of minors/ protected adult. Non-Inclusion Criteria: There are no non-inclusion criteria.

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

The clinical characteristics of IDs in pediatric and adult's patients.

Timeframe: Through study completion, an average of 10 years

The genetic characteristics of IDs in pediatric and adult's patients.

Timeframe: Through study completion, an average of 10 years

The biological characteristics of IDs in pediatric and adult's patients.

Timeframe: Through study completion, an average of 10 years

The morphometric characteristics of IDs in pediatric and adult's patients.

Timeframe: Through study completion, an average of 10 years

Trial details

NCT IDNCT05945576

SponsorInstitut National de la Santé Et de la Recherche Médicale, France

Sponsor typeOTHER_GOV

Study typeOBSERVATIONAL

Primary completion2028-03

Contact for this trial

Agnès LINGLART

+33 1 45 21 78 53 agnes.linglart@aphp.fr

View on ClinicalTrials.gov More Silver Russell Syndrome trials

Plain-language summary

Who can participate

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

What they're measuring

The clinical characteristics of IDs in pediatric and adult's patients.

Timeframe: Through study completion, an average of 10 years

The genetic characteristics of IDs in pediatric and adult's patients.

Timeframe: Through study completion, an average of 10 years

The biological characteristics of IDs in pediatric and adult's patients.

Timeframe: Through study completion, an average of 10 years

The morphometric characteristics of IDs in pediatric and adult's patients.

Timeframe: Through study completion, an average of 10 years