Started this discussion. Last reply by Michele Jul 1, 2014. 11 Replies 0 Favorites
Adding your experiences with Duchenne or Becker to ongoing research is vital…Continue
Started Jan 29, 2013 0 Replies 0 Favorites
NCBDDD’s Division of Human Development and Disability is pleased to announce a rebroadcast and live question and answer session of the CDC Public Health Grand Rounds: Where in health is disability?…Continue
Posted on June 2, 2015 at 1:00pm 0 Comments 0 Favorites
On May 13th the Medical Device Innovation Consortium (MDIC) released a report on incorporating patient preferences into the FDA’s benefit/risk assessments. It was much anticipated by PPMD as we continue our “aggressive engagement” with the FDA and industry trial sponsors. The report is full of really…
ContinuePosted on January 26, 2015 at 10:23am 0 Comments 0 Favorites
This started as a blog about the second publication on PPMD’s benefit/risk study, which was published in late December in a journal called The Patient (and more on that later). But something remarkable happened this week that helps frame…
ContinuePosted on November 25, 2014 at 9:00am 0 Comments 0 Favorites
PPMD is proud to announce a collaboration with Santhera Pharmaceuticals on a benefit/risk study that will focus specifically on patient and caregiver preferences regarding pulmonary therapies in the disease, and will be based on data from Santhera’s successful phase III clinical trial of idebenone. One of the recommendations in our community’s…
ContinuePosted on August 28, 2014 at 11:25am 0 Comments 0 Favorites
You may be thinking, “An informed consent document? No way do I want to read one of those!” But you can demonstrate the power of our community and help us write a more understandable, responsible informed consent for our community’s registry.
As many of you know, DuchenneConnect was…
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