welcome to DuchenneXchange

- a positively charged Duchenne muscular dystrophy community.
  • join today!
rareCurate
view full news & meetings section

MDA Releases Duchenne Fact Sheet, Survey Results Pointing to Need for Knowledge of Clinical Trials and Genetic Tests


Citing a persistent need for new treatments and patient support, the Muscular Dystrophy Association (MDA) has updated its Duchenne muscular dystrophy (DMD) fact sheet.

In related news, two top issues identified in a landmark MDA-funded survey of neuromuscular disease families were access to quality care along with a greater knowledge of genetic testing and clinical trials.

The fact sheet is intended for use by DMD families, patients’ teachers, and care providers, and includes an overview of Duchenne as well as its symptoms, treatment choices, essential facts and a terms glossary.

Its release was timed with Duchenne Muscular Dystrophy Awareness Week, Feb. 13–18, a news release said. The three-page guide notes, for example, that Duchenne affects 1 in 5,000 newborn boys, and that, owing to advances in cardiac and respiratory care, their life expectancy is generally increasing.

MDA Releases Duchenne Fact Sheet, Survey Results Pointing To Need For Knowledge Of Clinical Trials And Genetic Tests
Source: https://musculardystrophynews.com/2019/02/20/mda-releases-new-dmd-fact-sheet-survey-results-showing-interest-clinical-trials-genetic-tests/

rareRelated