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Data Collection of Patients With Rare Bone Diseases

Study acronym: RD-DATA
StatusRecruiting
PhaseNot specified
Started
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Record History

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  1. Secondary endpoints: details revised at 1 of 1 entry
    • Study description expanded, about 38 words
    • Site contact updated
    v7
  2. 2 versions Re-verified since May 27, 2024, no change to tracked fieldsv5-v6
  3. Lead sponsor: Istituto Ortopedico Rizzoli to Luca Sangiorgi
    • Site contact updated
    v4
  4. 2 versions Re-verified since Feb 21, 2022, no change to tracked fieldsv2-v3
  5. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
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.
Trial Details
NCT Number NCT05247645
Lead Sponsor Luca Sangiorgi
Conditions
(from sponsor)		 Skeletal Dysplasia
Related terms Mucopolysaccharidosis IV
Enrollment 1,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov