$1.2 Million MDA grant awarded to FSHD Clinical Trial Research Network

When the FSH Society made its initial grant award in 2016 to help establish the nationwide FSHD Clinical Trial Research Network (CTRN), we expected the network would be able to bring in significant additional outside funding. We’re delighted to report that the Muscular Dystrophy Association has now stepped up with a $1.2 million award over three years–$60,000 a year to each of the seven established CTRN sites.

The MDA grant comes on top of a $2.7 million National Institutes of Health UO1 award that will fund high priority research by the CTRN, including a clinical trial readiness study, which is currently recruiting volunteers. With the FSH Society investing a total of $258,000 to date in the CTRN, that is a 17-fold leveraging of our initial investment.

“MDA is pleased to support the expansion of this critical infrastructure for facioscapulohumeral muscular dystrophy research and therapy development,” said MDA Scientific Program Officer Laura Hagerty, Ph.D. “MDA support will enable the FSHD Clinical Trial Research Network to build a team of trained clinical evaluators all working with standardized approaches and develop regulatory strategies optimized to streamline drug trials.”

The seven CTRN sites include:

  • California: University of California Los Angeles — Perry Shieh, M.D., Ph.D., site principal investigator
  • Kansas: University of Kansas Medical Center — Jeffrey Statland, M.D., site principal investigator
  • Maryland: Kennedy Krieger Institute — Kathryn Wagner, M.D., site principal investigator
  • New York: University of Rochester Medical Center — Rabi Tawil, M.D., site principal investigator
  • Ohio: The Ohio State University — John T. Kissel, M.D., site principal investigator
  • Utah: University of Utah — Nicholas Johnson, M.D., site principal investigator
  • Washington: University of Washington — Leo H. Wang, M.D., Ph.D., site principal investigator

In the coming year, the FSH Society will be working with the CTRN to expand the network to additional sites both within the U.S. and in Europe.


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