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.
You can contact the COS team at firstname.lastname@example.org or Helen Sutherland at the John Walton Muscular Dystrophy Research Centre at email@example.com. You can also email the MDUK Research Line at firstname.lastname@example.org.