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Investigating liver and pancreatic abnormalities in patients with Fibrous Dysplasia and McCune Albright Syndrome

Screening and Epidemiology of Hepato-pancreato-biliary Abnormalities in Fibrous Dysplasia of Bone /McCune Albright Syndrome: the TIM-DYS Study

Hospices Civils de Lyon · NCT06177327

This study looks at whether people with Fibrous Dysplasia and McCune Albright Syndrome have liver and pancreas problems by using MRI scans to better understand their health risks.

Quick facts

Study typeObservational
Enrollment545 (estimated)
Ages18 Years to 100 Years
SexAll
SponsorHospices Civils de Lyon (other)
Locations16 sites (Angers and 15 other locations)
Trial IDNCT06177327 on ClinicalTrials.gov

What this trial studies

This observational study focuses on patients with Fibrous Dysplasia of Bone and McCune Albright Syndrome, aiming to investigate the prevalence and characteristics of hepato-pancreato-biliary abnormalities through magnetic resonance imaging (MRI). The study will analyze data collected from patients treated at expert centers in France, specifically looking at the age of onset and potential degeneration of these abnormalities. By monitoring these patients, the study seeks to enhance understanding of the risks associated with this rare condition and improve patient management.

Who should consider this trial

Good fit: Ideal candidates for this study are adults aged 18 and older with polyostotic Fibrous Dysplasia of Bone or McCune Albright Syndrome who have undergone hepato-bilio-pancreatic MRI.

Not a fit: Patients who do not have polyostotic Fibrous Dysplasia or McCune Albright Syndrome, or those who oppose data collection, will not benefit from this study.

Why it matters

Potential benefit: If successful, this study could lead to improved monitoring and management strategies for patients with Fibrous Dysplasia and McCune Albright Syndrome, potentially reducing the risk of cancer development.

How similar studies have performed: While there is limited data on similar studies, the investigation of hepato-pancreato-biliary abnormalities in this specific patient population is relatively novel.

Eligibility criteria

Show full inclusion / exclusion criteria 
Inclusion Criteria:

* Adults ≥18 years with polyostotic FD/MAS
* Followed up in the national FD reference center (Lyon) or in a FD French expert center: Angers, Bordeaux, Brest, Caen, Clermont-Ferrand, Lille, Marseille, Montpellier, Nice, Paris, Poitiers, Rennes, Saint-Etienne, Strasbourg.
* who had an hepato-bilio-pancreatic MRI during their follow-up, since January 2002
* No objection to data collection

Exclusion Criteria:

-Opposition to data collection

Where this trial is running

Angers and 15 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.

View on ClinicalTrials.gov →

Conditions: Fibrous Dysplasia of Bone, Fibrous dysplasia of bone, McCune Albright syndrome, pancreatic neoplasms, IPMN

Last reviewed 2026-05-15 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.