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UK SMA Patient Registry

StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗
Trial flagged as At Risk
Primary completion moved at least 14 years 7 months later May 31, 2025 → Jan 1, 2040
See other at-risk trials from Newcastle University

Record History

  1. Primary and study completion pushed from May 31, 2025 to Jan 1, 2040 Trial status changed: Unknown → Recruitingv6 Show 1 more changeShow less
    • Trial status changed: Unknown → Recruiting
  2. Changed Registry marked status Unknown; last known: Recruiting
  3. Primary and study completion dates: Dec 31, 2023 to May 31, 2025v5
  4. Primary and study completion dates: Dec 1, 2021 to Dec 31, 2023 Enrollment target: 700 to 800 · Study description expanded, about 61 words · Site contact updated · 2 morev4 Show 5 more changesShow less
    • Enrollment target: 700 to 800
    • Study description expanded, about 61 words
    • Site contact updated
    • Collaborators expanded, about 10 words
    • Study title shortened, about 2 words

    See this version in full on ClinicalTrials.gov ↗

  5. Site contact updatedv3
  6. Site contact updatedv2
  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  • Stopped: an ongoing trial was terminated, suspended or withdrawn.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.
Spinal muscular atrophy (SMA) is a form of motor neuron disease, most commonly caused by a mutation in the survival motor neuron 1 gene (SMN1) which results in a wide disease spectrum affecting children and adults. It is an autosomal recessive disorder and is therefore caused by inheritance of a mutated gene from each parent. All forms of SMA have an estimated combined incidence of 1 in 6,000 to 1 in 10,000 live births, with a carrier frequency of 1/40 to 1/60. The patient registry aims to facilitate a questionnaire-based research study in order to better characterise and understand the disease in the UK and in Ireland. Entry is via self-registration over a secure internet connection (https://www.sma-registry.org.uk/). Online, patients are asked to read an information sheet about the research project and then indicate their consent to demonstrate willingness to participate. Following online consent, subjects will be entered into the registry. This is an on-going database and all participants are invited to update their information on a biannual basis.
Trial Details
NCT Number NCT04292574
Lead Sponsor Newcastle University
Collaborators: Biogen, Roche Pharma AG, Adult SMA REACH, SMA REACH UK
Conditions Spinal Muscular Atrophy, SMA
Enrollment 800 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov