Registry for Multiple Osteochondromas
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.
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 |
|---|---|
| Enrollment | 10000 (estimated) |
| Sex | All |
| Sponsor | Istituto Ortopedico Rizzoli Academic / other |
| Locations | 1 site (Bologna, Emilia-Romagna) |
| Trial ID | NCT04133285 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals diagnosed with Multiple Osteochondromas, including those with prenatal diagnoses.
Not a fit: Patients with conditions unrelated to Multiple Osteochondromas will not benefit from this registry.
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 performed: Other studies utilizing disease registries have shown success in improving understanding and management of rare diseases, indicating that this approach is promising.
Eligibility criteria
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 this trial is running
Bologna, Emilia-Romagna
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.