SAN FRANCISCO, CA (May 2, 2019): MDF is pleased to announce the publication of the first-ever Consensus-based Care Recommendations for Congenital and Childhood-onset Myotonic Dystrophy Type 1 and Myotonic Dystrophy Type 2. The Quick Reference Guides to the full Consensus-based Care Recommendations were published in Neurology Clinical Practice online April 24th. The articles will be published in the NCP print journal in Summer 2019. MDF is working internationally to help ensure that the care recommendations are disseminated and adopted broadly.

Currently no evidence-based guidelines exist to establish standards of care for myotonic dystrophy, and comprehensive care guidelines will not be available until a number of studies are conducted to establish the rigorous evidence needed to create them. As a result, patients and caregivers report difficulty accessing informed clinicians and quality care.

To develop the recommendations, eleven international clinicians experienced in the care of infants and children living with congenital and childhood-onset DM1, and fifteen international clinicians experienced in the care and treatment of adults with DM2 worked collaboratively for over a year to develop consensus regarding care strategies for over 20 different body systems. The resulting clinical care recommendations are intended to help standardize and elevate care for people living with myotonic dystrophy, improving quality of life for affected families and reducing variability in clinical trial and study environments.

The publications and clinical care recommendations are accessible via the links below.

Consensus-based Care Recommendations for Adults with Myotonic Dystrophy Type 2

• Publication - Consensus-based Care Recommendations for Adults with Myotonic Dystrophy Type 2
• Comprehensive document and Quick Reference Guide - Consensus-based Care Recommendations for Adults with Myotonic Dystrophy Type 2

Consensus-based Care Recommendations for Congenital and Childhood-onset Myotonic Dystrophy Type 1

• Publication: Consensus-based Care Recommendations for Congenital and Childhood-onset Myotonic Dystrophy Type 1
• Comprehensive document and Quick Reference Guide - Consensus-based Care Recommendations for Congenital and Childhood-onset Myotonic Dystrophy Type 1

Adults with Myotonic Dystrophy Type 1

Clinical care recommendations for adults with myotonic dystrophy type 1 were published in Fall 2018. Access the comprehensive document and Quick Reference Guide here.

About Myotonic Dystrophy

Described as “the most variable of all diseases found in medicine”, myotonic dystrophy (DM) is an inherited disorder that can appear at any age and that manifests differently in each individual. The most common form of adult-onset muscular dystrophy, DM1 population-based prevalence is 1:2,300 people worldwide (Johnson 2018), and can cause muscle weakness, atrophy and myotonia, as well as problems in the heart, brain, GI tract, endocrine, skeletal and respiratory systems. There is currently no treatment or cure for DM.

About MDF: 

MDF is the world’s largest DM patient organization. Its mission is My Cause. My Cure: is to enhance the lives of people living with myotonic dystrophy, and advance research efforts focused on finding treatment and a cure for this disorder through education, advocacy and outreach.

For additional clinical resources offered by MDF, click here.