Collecting data on patients with rare bone diseases
Official title: Structured Collection of Data Relating to Rare Diseases With Predominantly Skeletal Involvement
Run by Istituto Ortopedico Rizzoli · NCT05247645 · Data updated 2026-11-12
This study is collecting information from people with rare bone diseases to better understand their conditions and improve diagnosis and care.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 1000 (estimated) |
| Sponsor | Istituto Ortopedico Rizzoli Academic / other |
| Locations | 1 site (Bologna, Emilia-Romagna) |
| Status | Recruiting |
| Started | October 10, 2020 |
| Main results expected | October 9, 2045 |
| Study ends | October 9, 2045 |
| Registry record updated | November 20, 2025 |
| Trial ID | NCT05247645 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are individuals diagnosed with rare diseases that predominantly affect the skeletal system.
✕Probably not a fit
Patients with conditions unrelated to rare skeletal diseases will 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
The RD-DATA initiative focuses on gathering comprehensive data from patients with rare skeletal disorders through a structured approach that includes both retrospective and prospective data collection. Utilizing an IT platform called GeDI, the study aims to streamline the collection of personal, clinical, genetic, and genealogical information to better understand the pathophysiology of these diseases. By integrating various data domains, the project seeks to correlate genetic backgrounds with phenotypic outcomes, ultimately improving diagnostic processes and patient care.
Why it matters
Potential benefit: If successful, this study could enhance the understanding and management of rare bone diseases, leading to improved patient outcomes.
How similar studies have gone: While this approach is innovative in its comprehensive data integration for rare skeletal disorders, similar studies have shown promise in improving patient management and understanding of rare diseases.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * All patients affected by rare diseases with predominantly skeletal involvement Exclusion Criteria: * Any condition unrelated to rare diseases with predominantly skeletal involvement
Where it's running
-
Irccs Istituto Ortopedico Rizzoli
Bologna, Emilia-Romagna, Italy Recruiting
Study contacts
- Principal investigator: Luca Sangiorgi, MD, PhD — IRCCS istituto Ortopedico Rizzoli
- Study coordinator: Marina Mordenti, PhD
- Email: registri.malattierare@ior.it
- Phone: 0516366062
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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.