Observing metabolic profiles in patients with imprinting disorders

National Cohort on Imprinting Disorders and Their Metabolic Consequences

Observational Institut National de la Santé Et de la Recherche Médicale, France · NCT05945576

This study looks at the metabolic health of people, both adults and children, with imprinting disorders to see if there are common patterns and how these conditions affect their overall health.

Quick facts

Study typeObservational
Enrollment2000 (estimated)
SexAll
SponsorInstitut National de la Santé Et de la Recherche Médicale, France Government
Locations20 sites (Angers and 19 other locations)
Trial IDNCT05945576 on ClinicalTrials.gov

What this trial studies

This observational study aims to describe the natural history of imprinting disorders (IDs) by analyzing the metabolic profiles of affected patients, both adults and children. It seeks to identify common metabolic characteristics across various IDs, assess the impact of these disorders on metabolic health, and explore potential therapeutic approaches. Participants will be recruited from partner centers, and informed consent will be obtained from all subjects. The study will focus on conditions such as Silver Russell Syndrome, Beckwith-Wiedemann Syndrome, and others.

Who should consider this trial

Good fit: Ideal candidates include both adults and children diagnosed with any imprinting disorder, regardless of disease severity.

Not a fit: Patients without a confirmed diagnosis of an imprinting disorder will not benefit from this study.

Why it matters

Potential benefit: If successful, this study could enhance the understanding of metabolic risks associated with imprinting disorders and improve clinical classification and prognosis.

How similar studies have performed: While there have been studies on individual imprinting disorders, this comprehensive approach to analyzing metabolic profiles across multiple IDs is relatively novel.

Eligibility criteria

Show full inclusion / exclusion criteria
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.

Where this trial is running

Angers and 19 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions Silver Russell SyndromeBeckwith-Wiedemann SyndromeTransient Neonatal Diabetes MellitusAngelman SyndromePrader-Willi SyndromeTemple SyndromeKagami-Ogata SyndromePseudohypoparathyroidism
Last reviewed 2026-06-15 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.