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)

Comments are closed.

Team of Five to Take on Tough Mudder Challenge This Sunday, 5th September a team of 5 fundraisers is taking on the ‘Tough Mudder‘, [...] Read more...
‘Cystinosis Connect’ Virtual Meet-up – 25th September 2021 Please join us for our next online meet-up. Your chance to virtually meet other patients and [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Please Subscribe to Our New Mailing List We are very excited to launch our new mailing list! By signing up for free at the link below [...] Read more...
All website content copyright Cystinosis Foundation UK (Charity No.1074885) 1997-2013, except where explicitly stated.
Data Protection Act Registration Number: Z9880997. Please refer to our terms and conditions and our privacy policy.
site:bonnyday