New study for Dysferlinopathy (LGMD2B/R2 or MM) is looking for participants

Published Date
23/01/2020
Author
Emma Smith-Bodie
Category
Research
Understanding Research

The John Walton Muscular Dystrophy Research Centre in Newcastle is recruiting for the second phase of their International Clinical Outcome Study (COS) for Dysferlinopathy (including LGMD2B/R2 and Miyoshi Myopathy).

The aim of this global study, funded by the Jain Foundation, is to deepen our understanding of the characteristics of Dysferlinopathy and how the condition changes over time. Through standardised assessments, researchers and clinicians can classify how the disease progresses and identify what is needed for optimal care and treatment, which may lead to new and better therapies.

Participants will visit Newcastle Hospital, the only UK site, four times over the two year study. At each visit they will be assessed by physicians and physiotherapists who specialise in their condition. Participants will be reimbursed for travel and accommodation expenses.

 

Any questions?

You can contact the COS team at cos@jain-foundation.org or Helen Sutherland at the John Walton Muscular Dystrophy Research Centre at helen.sutherland@ncl.ac.uk. You can also email the MDUK Research Line at research@musculardystrophyuk.org.

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