"How can parents and patients be assured they are receiving the best care and treatment and what are the components of optimal care?”
PPMD gathered clinical providers, hospital administrators, industry, government, and parents together for a 2-day pre-conference meeting in order to address these critical issues. In the United States and around the world, there is considerable variability in care. Parents often feel it is necessary to travel long distances in order to access optimal care. In addition, variability in care impacts the ability to conduct clinical studies and trials. Below is a summary of findings and needs that came out of this meeting. PPMD is interested in partnering with the MDA to further develop the process of stratifying and credentialing clinics. A meeting is planned in the coming month. We will keep you informed as this project evolves.
Transforming Duchenne Care Summary
The Transforming Duchenne Meeting was held June 27-28, 2012. Attending were 36 providers and hospital administrators representing 17 different hospitals from around the US. Attendees also included 8 parent representatives, as well as representation from PPMD, MDA, CDC, Cystic Fibrosis Foundation, NeuroNext and industry.
Summary of needs:
Kathi Kinnett, Director of Clinical Care
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