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.

A First for CFUK – Cystinosis Symposium 2020 Report On Saturday 10th Oct 2020 Cystinosis Foundation UK ran their first online Cystinosis Symposium, [...] Read more...
‘Cystinosis Connect’ Virtual Meet-up – 25th April 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...
Newsletter – November 2012 Issue 21 of the Foundation newsletter has recently been finalised and is available to download [...] 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