Status:

RECRUITING

UK SMA Patient Registry

Lead Sponsor:

Newcastle University

Collaborating Sponsors:

Biogen

Roche Pharma AG

Conditions:

Spinal Muscular Atrophy

SMA

Eligibility:

All Genders

Brief Summary

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 childr...

Detailed Description

Participants are asked to provide information by completing online questionnaires. The medical questionnaire asks specific questions about their SMA diagnosis and their condition, including their moto...

Eligibility Criteria

Inclusion

  • All patients with a confirmed SMA diagnosis (or pending diagnosis) are eligible for inclusion. Diagnosis will be confirmed via genetic testing results

Exclusion

  • There are no exclusion criteria for the registry

Key Trial Info

Start Date :

July 13 2008

Trial Type :

OBSERVATIONAL

Allocation :

ESTIMATED

End Date :

May 31 2025

Estimated Enrollment :

800 Patients enrolled

Trial Details

Trial ID

NCT04292574

Start Date

July 13 2008

End Date

May 31 2025

Last Update

July 23 2024

Active Locations (1)

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1

John Walton Muscular Dystrophy Research Centre

Newcastle upon Tyne, United Kingdom, NE1 3BZ