International Clinical Outcome Study for Dysferlinopathy (LGMD2B/Miyoshi)

UPDATE: Click here to read the first participant newsletter.         

An opportunity for patients with dysferlinopathies to participate in a clinical research study. This study is essential for finding outcomes that can be measured during clinical trials. Without good clinical outcomes, effective clinical trials cannot be performed.

Please click here for a list of the 14 worldwide study locations.

The Jain Foundation along with Dr. Kate Bushby at Newcastle University is coordinating the study across the 14 centers. The study is funded by the Jain Foundation.  Additional details, including contact information, can be found in the "Who is running the study" question in the FAQ section.

Why participate?

The outcome measures identified in this study are needed for the development and success of future clinical trials. In addition, the information gained in this study will provide a better understanding of the disease, ensure optimal care and treatment, and will lead to new and better therapies.

Please visit the pages below for more information about the International Clinical Outcome Study: