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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Page 1 of 1 (1 locations)

1

Newcastle University

Newcastle upon Tyne, United Kingdom