Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry

StatusRecruiting
PhaseNot specified
Started

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Record History

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  1. Primary and study completion dates: Jun 2025 to Jun 2028v32
  2. Eligibility criteria shortened, about 11 wordsv31
  3. Primary and study completion dates: Jun 2024 to Jun 2025v30
  4. Primary and study completion dates: Jun 2023 to Jun 2024v29
  5. 4 versions Re-verified since Nov 5, 2019, no change to tracked fieldsv25-v28
Show 23 earlier versionsHide 23 earlier versions
  1. Primary and study completion dates: Jun 2018 to Jun 2023v24
  2. 4 versions Re-verified since Oct 28, 2015, no change to tracked fieldsv20-v23
  3. Enrollment target: 2300 to 3000
    • Study description expanded, about 2 words
    v19
  4. Re-verified, no change to tracked fieldsv18
  5. Site contact updatedv17
  6. Primary and study completion dates: Jun 2013 to Jun 2018v16
  7. Primary completion date: Jun 2013
    • Eligibility criteria expanded, about 11 words
    v15
  8. Re-verified, no change to tracked fieldsv14
  9. Lead sponsor: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) to University of Rochester
    • Study completion date: Sep 2010 to Jun 2013
    v13
  10. 2 versions Re-verified since Sep 3, 2008, no change to tracked fieldsv11-v12
  11. Site contact updatedv10
  12. Study description shortened, about 1 wordv9
  13. Study completion date: Sep 2010
    • Start date: Sep 2000
    • Eligibility criteria expanded, about 2 words
    v8
  14. Study description expanded, about 93 wordsv7
  15. Enrollment target: 9622 to 2300v6
  16. Site contact updatedv5
  17. Re-verified, no change to tracked fieldsv4
  18. Site contact updatedv3
  19. Re-verified, no change to tracked fieldsv2
  1. Study First Submitted
  • 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.
Myotonic dystrophy (DM) and facioscapulohumeral muscular dystrophy (FSHD) are inherited disorders characterized by progressive muscle weakness and loss of muscle tissue. The purpose of this registry is to connect people with DM or FSHD with researchers studying these diseases. The registry will offer individuals with DM and FSHD an opportunity to participate in research that focuses of their diseases. The registry will also help scientists to accomplish research on DM and FSHD and to distribute their findings to patients and care providers.
Trial Details
NCT Number NCT00082108
Lead Sponsor University of Rochester
Collaborators: National Institute of Neurological Disorders and Stroke (NINDS)
Conditions
(from sponsor)		 Myotonic Dystrophy, Facioscapulohumeral Muscular Dystrophy, Muscular Dystrophy, Myotonic Dystrophy Type 1, Myotonic Dystrophy Type 2, Congenital Myotonic Dystrophy, PROMM (Proximal Myotonic Myopathy), Steinert's Disease +1 more
Related terms Muscular Dystrophies, Muscular Dystrophy, Facioscapulohumeral, Myotonic Dystrophy
Enrollment 3,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov