Dr. Rabi Tawil discusses the National Registry based in Rochester, NY.
What is the purpose of the National Registry of FSHD Patients and Family Members and how does it work?
The FSHD Registry was created in 2000 with funding from NIH. Its purpose … http://fshfriends.org/blog/fshd-registry/
258 members of the URMC Registry completed a survey last year. Results indicate that 79% of FSHD patients and 68% of DM patients experience pain.
Newsletter of the National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy (FSHD) Patients and Family Members. Reprinted with permission.
How common i… http://fshfriends.org/blog/commonality-pain-dm-fshd/
Small but critical grant awarded two key stakeholders in the push for FSHD trial readiness.
This grant covers travel and lodging for Hugh Dawkins and Richard Roxburgh for ENMC's Global FSHD Registry Framework: Stakeholder workshop which will revise the core data elements… http://fshfriends.org/blog/enmc-travel-grant/