SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Distal Myopathy Study – Participants Needed

Dr. Florian Eichler, Associate Professor of Neurology at the Massachusetts General Hospital in Boston, US is conducting a multi-part research study, looking at distal myopathy (muscle wastage in the hands, arms, feet and legs) in nephropathic cystinosis.

If you are an adult with cystinosis you can participate by completing a short survey, it takes no longer than 5 minutes to complete. The purpose of this portion of the study is to create a disease-specific assessment tool for the cystinosis patient community called Distal Myopathy Function Score (DMFS).

For more information, including how to participate, please click the link below.

Distal Myopathy Study Cover Letter (PDF)

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