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:

  • Develop and choose members for a “Core Group”: this would include leaders in Duchenne care from around the country, including providers, researchers, and industry. There will be parent representation on this group.

  • Define responsibilities for the Core Group: The proposed responsibilities of the Core Group, would first include evaluating and specifying practice parameters for five aspects of Duchenne care. Those five aspects would include: cardiac care, neurologic care, pulmonary care, PM&R/PT, and coordination/communication. The Core Group would then present the proposed practice parameters to a larger, specialty specific working group for critique.

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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