FSHD Registry Newsletter – July 2017 Edition (download here)
This edition includes:
- What is Clinical Research? – Different Types of Clinical Research
- How are trials designed?
- How do we know if a clinical trial is successful?
- Ongoing clinical research studies
The UK FSHD Patient Registry has been used as a tool to conduct research for a number of academic publications. Below you will find summaries of these publications:
Title: Chronic Pain Has a Strong Impact on Quality of Life In Facioscapulohumeral Muscular Dystrophy (download summary)
Guides for both clinicians and patients are available to download below.
This is a summary of the American Academy of Neurology (AAN) guideline on the evaluation, diagnosis, and management of facioscapulohumeral musculardystrophy (FSHD).Please refer to the full guideline at AAN.com/guidelines for more information, including the complete clinical context and definitions of theclassifications of evidence and recommendations.