Toolkits & Publications

Clinical Care Recommendations

Myotonic offers resources and information for clinicians treating people living with myotonic dystrophy. Be sure to download and share these with your doctors to help educate them about myotonic dystrophy care recommendations and improve the care your family receives. Below please find:

Clinical Care Recommendations for: Adults with Myotonic Dystrophy Type 1

  • English - Consensus-based Care Recommendations for Adults with Myotonic Dystrophy Type 1 and Quick Reference Guide

  • German - Konsensbasierte Behandlungsempfehlungen für erwachsene Patienten mit Myotoner Dystrophie Typ 1 (DM1) and German Quick Reference Guide

  • Italian - Raccomandazioni per la cura delle persone adulte affette da Distrofia Miotonica di tipo 1

  • French - Recommandations de soins basées sur le consensus pour les adultes atteints de Dystrophie Myotonique de Type 1

  • French-Canadian - Recommandations fondées sur le consensus pour le soin des adultes atteints de dystrophie myotonique de type 1

Consensus-based Care Recommendations for Children with Myotonic Dystrophy Type 1

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

Pending Consensus-based Care Recommendations:

  • Consensus-based Care Recommendations for Cardiologists Treating Adults with Myotonic Dystrophy Type 1
  • Consensus-based Care Recommendations for Pulmonologists Treating Adults with Myotonic Dystrophy Type 1

Guidelines

Anesthesia Guidelines: Regardless of the form of DM or the severity of DM symptoms experienced, individuals can have severe and life-threatening reactions to anesthesia and image should be monitored carefully whenever anesthesia is administered. Download the short one-page Anesthesia Quick Reference Guide to share with your clinician and anesthesiologist.

Going to School with Myotonic Dystrophy: A Guide to Understanding Special Education and IDEA: This comprehensive resource helps parents and family members take advantage of the Individuals with Disabilities Act (IDEA) that governs programs and services for children with disorders like myotonic dystrophy. The Guide covers services and mandates for ages newborn through 21, and provides guidance, tips and resources for parents and caregivers of children with congenital and childhood-onset myotonic dystrophy. Myotonic community members can use the Guide to create the best possible experience for their children as they transition from pre-school to primary and secondary education, and into young adulthood. Download the short Guide to Myotonic Dystrophy for School Professionals. Email Myotonic to request a hard copy of the full Guide.

Toolkits

Applying for Social Security Disability Benefits Toolkit: To help meet the needs of Myotonic families who are applying for U.S. disability benefits, Myotonic created "Applying for Social Security Disability Benefits", a toolkit created to help individuals and families understand the process of applying for Social Security Administration (SSA) disability benefits. The toolkit was designed to assist individuals affected by myotonic dystrophy in navigating the application process for Social Security Disability Insurance (SSDI) benefits and Supplemental Security Income (SSI) benefits. To order a hard copy of the toolkit "Applying for Social Security Disability Benefits", send an email to Myotonic.

Myotonic Toolkit: Myotonic has created an easy-to-use toolkit with the guidance of the Myotonic Scientific Advisory Committee. The Toolkit includes valuable information for affected individuals and their families and resources for medical professionals. Order a hard copy of the Myotonic Toolkit, or download it in the following languages:

  • English

  • French

  • German

  • Icelandic

  • Spanish

Other Publications

Myotonic My Clinic Visit PlannerPlanner that enables families to discuss upcoming clinic visits and jot down important questions and information to help ensure that it was shared at the appointment. The Planner is available to download or by request to Myotonic.

The Facts: Myotonic Dystrophy, by Prof. Peter Harper, published by Oxford University Press, 2002. A hundred-page book written for families living with myotonic dystrophy, written in easy-to-understand language. A good place to begin educating yourself. Available online at Oxford University Press or Amazon.com. Also included in the Myotonic Toolkit, hardbound edition.

  • Les Faits (version française / French version)
  • I Fatti (versione italiana / Italian version)
  • Os Factos (versão em português / Portuguese version)
  • Los Hechos (versión española / Spanish version)

Myotonic Cooks. A recipe book for those with dysphagia, other swallowing disorders, or difficulty chewing. These recipes were all submitted by Myotonic community members and tested by a nutritionist.

Myotonic Dystrophy – Present Management, Future Therapy, edited by Prof. Peter Harper, published by Oxford University Press, 2004. A 240-page book written by DM experts from around the world, geared to medical professionals. Highly technical descriptions; great book to own in order to take to medical appointments as specific symptoms arise.

Myotonic Dystrophy, 3rd Edition, by Prof. Peter Harper, published by W.B. Saunders, 2001. A 400-page book on DM written for medical professionals. Highly technical descriptions.

Genetic Instabilities and Neurological Diseases, 2nd ed., by Robert D. Wells and Tetsuo Ashizawa, published by Elsevier Academic Press, 2006. Highly technical descriptions.

Myotonic Publishes Article in Therapeutic Innovation and Regulatory Science - The first publication generated by Myotonic, titled "Patient-Centered Therapy Development for Myotonic Dystrophy: Report of Myotonic–Sponsored Workshop (pdf)," was published in Therapeutic Innovation and Regulatory Science. The report examines the status of biomarker, endpoint and clinical trial design for myotonic dystrophy therapy development, and lays the groundwork for the inclusion of the patient and caregiver voice in DM therapy development. It also includes a report on the Benefits and Risks Study Myotonic conducted with Silicon Valley Research Group.

Myotonic Releases Voice of the Patient Report on the Myotonic Dystrophy Patient-Focused Drug Development Externally-Led Meeting - The report summarizes patient and caregiver input on the disease burden of myotonic dystrophy types 1 and 2, and what specific symptoms most impact their daily lives. It also provides patient and caregiver perspectives on what clinically meaningful benefits would be for future DM therapies. Access the DM Voice of the Patient Report and the FDA submission letter. Watch videos of the meeting here and here.

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