Registry for Multiple Osteochondromas
Official title: Registry of Multiple Osteochondromas That Collects Clinical, Functional, Genetic, Genealogical, Imaging, Surgical, Treatment, Quality of Life Data. Data is Linked to Patients' Biological Samples, When Available.
Run by Istituto Ortopedico Rizzoli · NCT04133285 · Data updated 2026-11-12
This study is creating a registry to gather information from people with Multiple Osteochondromas to help improve diagnosis and understanding of the condition.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 10000 (estimated) |
| Sponsor | Istituto Ortopedico Rizzoli Academic / other |
| Locations | 1 site (Bologna, Emilia-Romagna) |
| Status | Recruiting |
| Started | June 28, 2013 |
| Main results expected | July 2018 |
| Study ends | December 2032 |
| Registry record updated | November 20, 2025 |
| Trial ID | NCT04133285 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this registry are individuals diagnosed with Multiple Osteochondromas, including those with prenatal diagnoses.
✕Probably not a fit
Patients with conditions unrelated to Multiple Osteochondromas will not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This registry collects and integrates data on patients with Multiple Osteochondromas, focusing on personal, clinical, genetic, and genealogical information. It aims to simplify the diagnostic process and improve data management through a web-accessible platform designed for compliance with medical informatics standards. By correlating genetic backgrounds with phenotypic outcomes, the registry seeks to enhance the understanding of the disease's pathophysiology. The study includes both retrospective and prospective data collection to provide a comprehensive overview of the condition.
Why it matters
Potential benefit: If successful, this registry could lead to improved diagnosis and management of Multiple Osteochondromas, ultimately enhancing patient care.
How similar studies have gone: Other studies utilizing disease registries have shown success in improving understanding and management of rare diseases, indicating that this approach is promising.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * All Multiple Osteochondromas patients, including prenatal diagnosis of Multiple Osteochondromas Exclusion Criteria: * Any condition unrelated to Multiple Osteochondromas
Where it's running
-
Irccs Istituto Ortopedico Rizzoli
Bologna, Emilia-Romagna, Italy Recruiting
Study contacts
- Principal investigator: Luca Sangiorgi, MD, PhD, MS — Istituto Ortopedico Rizzoli
- Study coordinator: Marina Mordenti, PhD
- Email: registri.malattierare@ior.it
- Phone: +39 05 6366062
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.