Global Registry for COL6-related Dystrophies

Status: Unknown status
Location: See location...
Intervention Type: Other
Study Type: Observational [Patient Registry]
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 intermediate form of these diseases. The registry team is based at the John Walton Muscular Dystrophy Research Centre at Newcastle University, UK and is part of the TREAT-NMD alliance global network of registries. The registry has been developed in partnership with a number of leading neuromuscular researchers and is funded by the Collagen VI Alliance. This patient registry will: Help identify patients for relevant clinical trials as they become available Encourage further research into Collagen 6-related dystrophies Provide researchers with specific patient information to support their research Assist doctors and other health professionals by providing them with up-to-date information on managing Collagen 6- related dystrophies, to help them deliver better standards of care for their patients The investigators welcome the registration of: ✓ All patients, with a diagnosis of a COL6-related dystrophy (Bethlem Myopathy, Ullrich Congenital Muscular Dystrophy or Intermediate form) , which has been confirmed via genetic testing or muscle biopsy.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: No
View:

• confirmed diagnosis of a COL6-related dystrophy (Bethlem Myopathy, Ullrich Congenital Muscular Dystrophy (UCMD), or an intermediate form of these conditions.

Locations
Other Locations
United Kingdom
Newcastle University
Recruiting
Newcastle Upon Tyne
Contact Information
Primary
Lucy Imber
lucy.imber@newcastle.ac.uk
01912418605
Backup
Lindsay Murphy
lindsay.murphy@newcastle.ac.uk
Time Frame
Start Date: August 1, 2018
Completion Date: October 2020
Participants
Target number of participants: 1000
Treatments
Participants with COL6-related dystrophy
Participants who have volunteered to participate will complete various questionnaires relating to their condition.
Sponsors
Leads: Newcastle-upon-Tyne Hospitals NHS Trust

This content was sourced from clinicaltrials.gov

Similar Clinical Trials