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Related Concept Videos

Sex Linked Disorders01:43

Sex Linked Disorders

Like autosomes, sex chromosomes contain a variety of genes necessary for normal body function. When a mutation in one of these genes results in biological deficits, the disorder is considered sex-linked.
Sex-linked Disorders01:43

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Like autosomes, sex chromosomes contain a variety of genes necessary for normal body function. When a mutation in one of these genes results in biological deficits, the disorder is considered sex-linked.
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Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
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DuchenneConnect Registry Report.

Vanessa Rangel1, Ann S Martin, Holly L Peay

  • 1VP Genetic Services, PatientCrossroads; DuchenneConnect Coordinator, Parent Project Muscular Dystrophy and Senior Director, Parent Project Muscular Dystrophy.

Plos Currents
|March 31, 2012
PubMed
Summary
This summary is machine-generated.

DuchenneConnect, established in 2007, bridges information gaps for Duchenne/Becker muscular dystrophy patients, care providers, and researchers. This initiative aims to accelerate therapeutic advancements by improving medical care and research collaboration.

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Area of Science:

  • Neurology
  • Genetics
  • Biomedical Research

Background:

  • Duchenne/Becker muscular dystrophy research has significantly increased.
  • A need exists for improved information exchange among stakeholders.
  • Parent Project Muscular Dystrophy established DuchenneConnect in 2007.

Purpose of the Study:

  • To bridge the information gap between patients, care providers, and researchers in Duchenne/Becker muscular dystrophy.
  • To address medical care needs within the Duchenne/Becker muscular dystrophy community.
  • To accelerate therapeutic advancements for Duchenne/Becker muscular dystrophy.

Main Methods:

  • Establishment of DuchenneConnect as an information network.
  • Data collection through June 2011 for reporting.
  • Regular sharing of information by DuchenneConnect and PPMD.

Main Results:

  • DuchenneConnect serves as a crucial information hub.
  • The initiative facilitates better communication and collaboration.
  • The report marks the first in a series of DuchenneConnect/PPMD updates.

Conclusions:

  • Robust information networks are essential for advancing Duchenne/Becker muscular dystrophy research.
  • DuchenneConnect plays a vital role in supporting the patient community and research efforts.
  • Continued information sharing is key to accelerating therapeutic progress.