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Registry of Ollier Disease and Maffucci Syndrome

Study acronym: ROM
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 50 words
    • Site contact updated
    v8
  2. Re-verified, no change to tracked fieldsv7
  3. Primary completion date: Jul 2023 to Jan 2032v6
  4. 2 versions Re-verified, no change to tracked fieldsv4-v5
  5. Trial status: Enrolling by Invitation to Recruiting
    • Site details revised
    v3
  6. Primary completion date: Jul 2022 to Jul 2023v2
  7. 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  • Stopped: an ongoing trial was terminated, suspended or withdrawn.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.
REM is a retrospective and prospective registry, finalized to care and research. 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 individuated in order to corroborate and integrate data from different resources and 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 NCT04134572
Lead Sponsor Luca Sangiorgi
Conditions
(from sponsor)		 Ollier Disease, Maffucci Syndrome
Related terms Enchondromatosis
Enrollment 400 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov