welcome to DuchenneXchange
- a positively charged Duchenne muscular dystrophy community.- join today!
- log in
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.
rareRelated
-
Safety Study of Eteplirsen to Treat Advanced Stage Duchenne Muscular DystrophyThe primary objective of this study is t...
-
Open Label, Extension Study of PRO044 in Duchenne Muscular Dystrophy (DMD)The purpose of this study is to see whet...
-
Exploratory Study of NS-065/NCNP-01 in DMDThis study is designed to assess the saf...
-
Catabasis Quarterly: Updates on edasalonexent and clinical trialsHappy New Year! As 2019 kicks off, our P...
-
Stem Cell Therapy in Duchenne Muscular DystrophyThe purpose of this study was to study t...
-
Nebivolol for the Prevention of Left Ventricular Systolic Dysfunction in Patients With Duchenne Muscular DystrophyThe objective is to determine whether ne...
-
Systemic Gene Delivery Clinical Trial for Duchenne Muscular DystrophyThe proposed clinical trial is a single-...
-
DMD clinical therapies II: P.133 The burden of participation in a clinical trial for boys with Duchenne muscular dys...Despite some medical breakthroughs in Du...
-
Roche Letter to the Duchenne CommunityBy now, many have heard about Pfizer's d...
-
Ataluren in patients with nonsense mutation Duchenne muscular dystrophy (ACT DMD): a multicentre, randomised, double...Background: Duchenne muscular dystrophy...
-
Capricor Therapeutics Announces Positive Results from its Interim Analysis in the HOPE-2 Trial to Treat Patients wit...Capricor Therapeutics, Inc. (NASDAQ: CAP...
