In June 2012, PPMD sponsored the first Transforming Duchenne Care meeting. The meeting was organized in response to clinical care discrepancies that exist between centers treating patients with Duchenne/Becker muscular dystrophy in North America. The purpose of this conference was to explore the unique clinical needs of the Duchenne/Becker patient and to investigate how centers could best align clinical programs to address these needs. Recommendations from that meeting resulted in the Transforming Duchenne Care Initiative, which is divided in to two phases. 

 

Phase I addressed transparency of clinical services, and it’s purpose is to make information regarding access to specialty and subspecialty care available to Duchenne/Becker patients in North America transparent and easily accessible to patients and families via an online website and written materials. The purpose of phase I is enable families living with Duchenne/Becker to make informed decisions regarding access to specialty care at individual clinics.

 

I am very pleased to announce that, due to the MDA’s investment of time and effort, Phase I has been accomplished! 

 

The MDA Clinical Pages have been enhanced to feature additional information about each MDA-sponsored neuromuscular clinic across the US. When visiting MDA.org you can type in the zip code, city, or state and be directed to the services in that area. Alternatively, you have access to clinics through clinic services pages at MDA.org/Services/Your-MDA-Clinic, where you again have the ability to type in the zip code, city, or state and be directed to the clinic in that area. 

 

Clinic specific information will include:

  • clinic address and Google map to the clinic
  • phone number for clinic and scheduling
  • clinic director(s)
  • providers who see patients in the clinic and their specialization
  • ancillary health professions on the team
  • link to the clinic’s website, specifically the neuromuscular program, if they have a website

 

Information continues to be updated and clinics will continue to notify the MDA, updating their information. 

 

PPMD thanks the MDA and applauds them for this effort! 


Kathi Kinnett, MSN, CNP
Vice President, Clinical Care
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Comment by Kathi Kinnett on February 19, 2013 at 1:52pm
This is a huge step in making available clinical services transparent to parents and patients and is very exciting news!

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