The clear message received by all at the end of the Transforming Duchenne Care meeting, held just prior to the PPMD Connect Conference, was that parents, providers and industry felt a need for clear, consistent standards of care for patients with Duchenne around the United States. Standardization of care would help to both reduce discrepancies in care as well as provide a protocol for clinical trials/research. Pat Furlong and I had an opportunity to sit down with Dr. Jerry Mendell, Nationwide Children’s Hospital, Columbus, Ohio, on August 2. Dr. Mendell has graciously offered to chair this effort with us.
We feel that we have two upcoming tasks:
Pat, Jerry, and I have spoken to Valerie Cwik at the MDA and hope they will partner with us in our efforts to standardize care, enabling us to give a clear, consistent message.
Next step: Core Group
Kathi Kinnett, Director of Clinical Care
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