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Society guideline links: Muscular dystrophy

Society guideline links: Muscular dystrophy

Introduction — This topic includes links to society and government-sponsored guidelines from selected countries and regions around the world. We will update these links periodically; newer versions of some guidelines may be available on each society's website. Some societies may require users to log in to access their guidelines.

The recommendations in the following guidelines may vary from those that appear in UpToDate topic reviews. Readers who are looking for UpToDate topic reviews should use the UpToDate search box to find the relevant content.

Links to related guidelines are provided separately. (See "Society guideline links: Cardiomyopathy" and "Society guideline links: Pediatric anesthesia".)

International

DMD Care Considerations Working Group (CCWG): Diagnosis and management of Duchenne muscular dystrophy, part 1 – Diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management (2018)

DMD CCWG: Diagnosis and management of Duchenne muscular dystrophy, part 2 – Respiratory, cardiac, bone health, and orthopaedic management (2018)

DMD CCWG: Diagnosis and management of Duchenne muscular dystrophy, part 3 – Primary care, emergency management, psychosocial care, and transitions of care across the lifespan (2018)

Specialty care for the patient with Duchenne muscular dystrophy (2018)

Diagnostic approach to the congenital muscular dystrophies (2014)

Consensus statement on standard of care for congenital muscular dystrophies (2010)

Canada

Canadian Thoracic Society (CTS): Clinical practice guideline executive summary on pediatric home mechanical ventilation (2017)

Canadian Paediatric Society (CPS): Position statement on mental health problems in children with neuromotor disabilities (2016)

CTS: Clinical practice guideline on home mechanical ventilation (2011)

United States

Myotonic Dystrophy Foundation (MDF): Myotonic dystrophy – Toolkits & publications

Parent Project Muscular Dystrophy (PPMD): Adult imperatives for Duchenne MD – A guide for providers

PPMD: Imperatives for Duchenne MD – A guide for providers

American Academy of Neurology (AAN): Practice guideline update summary – Corticosteroid treatment of Duchenne muscular dystrophy (2016, reaffirmed 2022)

AAN and American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM): Evidence-based guideline summary – Evaluation, diagnosis, and management of congenital muscular dystrophy (2015, reaffirmed 2021)

AAN and AANEM: Evidence-based guideline summary – Evaluation, diagnosis, and management of facioscapulohumeral muscular dystrophy (2015, reaffirmed 2021)

AAN and AANEM: Evidence-based guideline summary – Diagnosis and treatment of limb-girdle and distal dystrophies (2014, reaffirmed 2017)

American Heart Association (AHA): Scientific statement for the management of cardiac involvement associated with neuromuscular diseases (2017)

National Heart, Lung, and Blood Institute (NHLBI) and PPMD: Contemporary cardiac issues in Duchenne muscular dystrophy (2015)

Europe

European Federation of Neurological Societies (EFNS): Guidelines for the molecular diagnosis of neurogenetic disorders – Motoneuron, peripheral nerve and muscle disorders (2011)

United Kingdom

Adult North Star Network (ANSN): Consensus guideline for the standard of care of adults with Duchenne muscular dystrophy (2021)

National Institute for Health and Care Excellence (NICE): Highly specialised technologies guidance on ataluren for treating Duchenne muscular dystrophy with a nonsense mutation in the dystrophin gene (2016)

British Thoracic Society (BTS): Quality standard for respiratory management of children with neuromuscular weakness (2014)

Japan

[In Japanese] Japanese Society of Neurology (JSN): Practical guideline for dystrophia myotonica (DM) (2020)

[In Japanese] JSN: Guidance for advancing the diagnosis of muscular dystrophy (2019)

[In Japanese] Japanese Association of Rehabilitation Medicine (JARM): Japanese guidelines for pulmonary rehabilitation of neuromuscular disease and spinal cord injury, 1st edition (2014)

[In Japanese] JSN, Japanese Society of Child Neurology (JSCN), National Center of Neurology and Psychiatry (NCNP): Practical guideline for Duchenne muscular dystrophy (DMD) (2014)

Topic 121073 Version 7.0

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