Collecting data on patients with rare bone diseases
Structured Collection of Data Relating to Rare Diseases With Predominantly Skeletal Involvement
Istituto Ortopedico Rizzoli · NCT05247645
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 |
|---|---|
| Enrollment | 1000 (estimated) |
| Sex | All |
| Sponsor | Istituto Ortopedico Rizzoli (other) |
| Locations | 1 site (Bologna, Emilia-Romagna) |
| Trial ID | NCT05247645 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals diagnosed with rare diseases that predominantly affect the skeletal system.
Not a fit: Patients with conditions unrelated to rare skeletal diseases will not benefit from this study.
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 performed: 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.
Eligibility criteria
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 this trial is running
Bologna, Emilia-Romagna
- 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
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.
Conditions: Skeletal Dysplasia, Rare Disease with predominantly skeletal involvement, Disease Evolution, Data Collection, Natural History Study