Status:
UNKNOWN
Global Registry for COL6-related Dystrophies
Lead Sponsor:
Newcastle-upon-Tyne Hospitals NHS Trust
Conditions:
Bethlem Myopathy
Ullrich Congenital Muscular Dystrophy 1, Digenic, Col6A1/Col6A2
Eligibility:
All Genders
Brief Summary
The Global Registry for COL6-related dystrophies (www.collagen6.org) is a database for individuals who have been diagnosed with Bethlem Myopathy, Ullrich Congenital Muscular Dystrophy (UCMD) or an int...
Detailed Description
The Global Registry for COL6-related dystrophies (www.collagen6.org) is an international registry for patients with a COL6-related condition; no experimental intervention is involved. Patients will re...
Eligibility Criteria
Inclusion
- confirmed diagnosis of a COL6-related dystrophy (Bethlem Myopathy, Ullrich Congenital Muscular Dystrophy (UCMD), or an intermediate form of these conditions.
Exclusion
- absence of a diagnosis of COL6-related dystrophy
- Bethlem Myopathy Type 2, Ullrich Congenital Muscular Dystrophy 2 and other COL12-related conditions
Key Trial Info
Start Date :
August 1 2018
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
October 1 2024
Estimated Enrollment :
1000 Patients enrolled
Trial Details
Trial ID
NCT04020159
Start Date
August 1 2018
End Date
October 1 2024
Last Update
March 22 2023
Active Locations (1)
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1
Newcastle University
Newcastle upon Tyne, United Kingdom