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A global FSHD Registry Framework
Workshop number 225
18 - 20 November 2016
See: Travel Grant
The European Neuromuscular Centre (ENMC) has awarded a grant co-written by Rosella Tuppler from Università degli Studi di Modena e Reggio Emilia, Gregory Block and Abbi Engel from Friends of FSH Research, June Kinoshita from the FSH Society, and Libby Wood from Treat NMD in the UK. The purpose of the grant is to convene all key stake holders in charge of FSHD patient registries throughout the world to discuss expanding the core set of data that is collected within those registries.
Registries are traditionally thought of as contact databases to recruit patients for studies to test efficacy of a disease intervention. However, since these databases can also collect other information about patients (like information on specifics of their disease state) the data can be quite powerful when collected over time, and ultimately informs researchers or clinicians on the state of the disease.
Given that FSHD has considerable variability in presentation, the global funding community focusing on FSHD has agreed that patient registries are top priority,
AIMS OF THE WORKSHOP
See Lay Report