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The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry

StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗

Record History

  1. Re-verified, no change to tracked fieldsv7
  2. Primary and study completion dates: Jan 2030 to Jan 2040 Study description shortened, about 58 words · Eligibility criteria expanded, about 1 wordv6 Show 2 more changesShow less
    • Study description shortened, about 58 words
    • Eligibility criteria expanded, about 1 word

    See this version in full on ClinicalTrials.gov ↗

  3. Primary and study completion dates: Dec 2021 to Jan 2030 Site contact updatedv5 Show 1 more changeShow less
    • Site contact updated
  4. Primary endpoints: 6 to 7 Enrollment target: 1009 to 1018v4 Show 1 more changeShow less
    • Enrollment target: 1009 to 1018

    See this version in full on ClinicalTrials.gov ↗

  5. Primary and study completion dates: Dec 2020 to Dec 2021 Enrollment target: 920 to 1009v3 Show 1 more changeShow less
    • Enrollment target: 920 to 1009
  6. Study description shortened, about 6 wordsv2 See this version in full on ClinicalTrials.gov ↗
  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  • Stopped: an ongoing trial was terminated, suspended or withdrawn.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.
Facioscapulohumeral Dystrophy (FSHD) is the third most common form of neuromuscular dystrophy worldwide with an estimated prevalence of one in 20,000. FSHD is an autosomal dominant genetic disease and is estimated to affect up to 3,000 people in the UK. The patient registry facilitates a questionnaire based research study to better characterise and understand the disease in the UK, and helps to identify potential participants eligible for clinical trials.
Trial Details
NCT Number NCT04001582
Lead Sponsor Newcastle University
Conditions Facioscapulohumeral Muscular Dystrophy
Enrollment 1,018 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov