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Data Collection of Patients With Rare Bone Diseases
Sponsor: Luca Sangiorgi
Summary
RD-DATA is a retrospective and prospective data collection, finalized for care and research purposes. It is articulated in main sections - strongly related and mutually dependent on each other - corresponding to different data domains: personal information, clinical data, genetic data, genealogical data, surgeries, etc. This approach has been developed to corroborate and integrate data from different sources and evaluating several aspects of the diseases and to correlate genetic background and phenotypic outcomes, in order to better investigate diseases pathophysiology. Due to legal requirements, institutional directives and organizational issues, we are unable to include individuals residing outside Italy in the registry at this time. We are currently engaged in the preparation of a recruitment process for individuals residing outside Italy.
Official title: Structured Collection of Data Relating to Rare Diseases With Predominantly Skeletal Involvement
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
1000
Start Date
2020-10-10
Completion Date
2045-10-09
Last Updated
2025-11-20
Healthy Volunteers
No
Conditions
Locations (1)
Irccs Istituto Ortopedico Rizzoli
Bologna, Emilia-Romagna, Italy