Clinical trial Recruiting at 1 site Observational

Observing and following patients with Multiple Endocrine Neoplasia Type 1

Official title: Study and Follow-up of Multiple Endocrine Neoplasia Type 1

Run by Centre Hospitalier Universitaire Dijon · NCT03348501 · Data updated 2026-11-12

This study is tracking people with Multiple Endocrine Neoplasia Type 1 to see how the condition develops over time in both those with symptoms and those who carry the gene but don’t have symptoms yet.

Quick facts

Study typeObservational
SexAll
Enrollment2000 (estimated)
SponsorCentre Hospitalier Universitaire Dijon
Academic / other
Locations1 site (Dijon)
StatusRecruiting
StartedJuly 2012
Main results expectedJuly 2031
Study endsJuly 2031
Registry record updatedNovember 21, 2017
Trial IDNCT03348501 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates include symptomatic individuals with a confirmed diagnosis of MEN1 or asymptomatic patients carrying the MEN1 mutation living in France.

Probably not a fit

Patients with a single-organ genetic endocrine disease associated with another genetic syndrome may not benefit from this study.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study focuses on patients diagnosed with Multiple Endocrine Neoplasia Type 1 (MEN1), a genetic condition that leads to various endocrine tumors. The study aims to gather long-term follow-up data on symptomatic individuals and asymptomatic carriers of the MEN1 mutation. Participants will be monitored for the development of clinical manifestations associated with the disease, which typically appear later in life. The research will help in understanding the progression and management of MEN1.

Why it matters

Potential benefit: If successful, this study could improve the understanding and management of MEN1, leading to better patient outcomes.

How similar studies have gone: While there may be studies on MEN1, this specific observational approach focusing on long-term follow-up is relatively novel.

Who can join: the full rules

Show full inclusion / exclusion criteria
Inclusion Criteria:

\- Symptomatic individuals with a confirmed diagnosis of MEN1 and who live in France.

Patients with the following characteristics will also be included in the cohort:

* At least two of the three cardinal clinical lesions (parathyroid, pancreas, pituitary),
* OR an isolated known lesion of the disease, cardinal or not (parathyroid, pancreas, pituitary, adrenal, thymus, bronchus, tumour of the central nervous system) associated with a mutation of the MEN1 locus on chromosome 11q13,
* OR an isolated lesion, cardinal or not (parathyroid, pancreas, pituitary, adrenal, thymus, bronchus, tumour of the central nervous system) in an individual with a confirmed family history of MEN1.

asymptomatic patients who carry a characteristic mutation of MEN1. Current knowledge suggests that these patients will develop symptoms during their follow-up.

Exclusion Criteria:

patients who present a single-organ genetic endocrine disease associated with another genetic syndrome (familial isolated pituitary adenoma FIPA, familial isolated hyperparathyroidism FIHP)

Where it's running

  • CHU Dijon Bourgogne
    Dijon, France
    Recruiting

Study contacts

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How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 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.