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COS2Recruitment is complete

We have reached our goal of 200 participants!  Thank you so much to everyone who is participating in COS2.  The information that we gain for this study is very important for the success of future clinical trials and for the development of standards of care for dysferlinopathy to help with ongoing disease management.

As many of you know, the last visit for the first International Clinical Outcome Study for Dysferlinopathy (i.e. COS) occurred at the end of March 2018. For a summary of this first study and information about what we have learned and are continuing to learn visit the “Study Results” section below.

With the end of the first COS study, we are now looking to the future and what more is needed to prepare us for clinical trials in dysferlinopathy. This led to the development of COS2, which is an extension of the COS study. The main objectives of COS2 are to validate the findings from COS through further evaluation of the current COS patients and the recruitment of new participants, to better understand the transition from ambulant to non-ambulant, refine subgroup characteristics, and identify early indicators/predictors of decline.

COS2 will evaluate 200 patients at 4 visits over 2 years using the best assessments from COS and the evaluation of some new assessments.  These visits will occur at 16 sites in 9 countries.  COS2 includes both individuals from COS1 as well as new participants.

For additional information about the study, eligibility criteria, assessments, and location of COS2 clinics please visit the sections below or contact us at or 425-882-1492.

You can also review COS2 study information at

Study Sites

16 centers across the US, Europe, Asia and Chile.  The study is free for all participants and funds are available for patients and a helper to travel to the nearest study center.

Study Goals

COS2 is designed to build on and validate the findings of COS and is a necessary step for the development and success of future clinical trials.

Data Collected

Medical, Physiotherapy, and MRI assessments

Study Results

Learnings and publications from both COS and COS2