Useful Links

Find useful links to help you and your family members better understand DM, learn more about resources for rare diseases, and more. 

PubMed

PubMed is a searchable database of published scientific research articles maintained by the National Library of Medicine. This site is designed for researchers and clinicians and contains journal articles about research in myotonic dystrophy. View their online tutorials on the use of the site. Visitors can search terms such as myotonic dystrophy, Steinert’s disease, proximal myotonic myopathy, and PROMM to find articles about research into myotonic dystrophy. 

ClinicalTrials.gov

ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted in the United States and around the world. The website is maintained by the National Library of Medicine. You can search for studies by topic and find out more information about a study’s purpose, who may participate, locations and phone numbers for more details. 

Office of Rare Diseases Research (ORDR)

The ORDR website aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about ORDR-sponsored biomedical research, scientific conferences, and rare and genetic diseases. It also serves as a portal to information on major topics of interest to the rare diseases community.

National Organization for Rare Diseases (NORD)

NORD is a unique federation of voluntary health organizations dedicated to helping people with rare diseases and assisting the organizations that serve them. NORD provides information for patients and families, mentoring for patient organizations, advocacy for the rare disease community, research grants, patient assistance programs and more.

Centers for Disease Control and Prevention (CDC)

The mission of the Centers for Disease Control and Prevention (the CDC) is collaborating to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats.  

Treat-NMD Neuromuscular Network

TREAT-NMD is a network for the neuromuscular field that provides an infrastructure to ensure that the most promising new therapies reach patients as quickly as possible. Since its launch in January 2007 the network's focus has been on the development of tools that industry, clinicians and scientists need to bring novel therapeutic approaches through preclinical development and into the clinic, and on establishing best-practice care for neuromuscular patients worldwide.  

Genetic Alliance

Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.  Genetic Alliance’s network includes more than 1,000 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations.  

MD Support Group

The Myotonic Dystrophy Support Group is a registered charity dedicated to offering the hand of friendship and support to all those affected by Myotonic Dystrophy. We have a central helpline and a network of regional contacts throughout much of the UK. 

Other Registries:

Global Rare Diseases (Patient) Registry and Data Repository (GRDR) 

The GRDR was developed by the Office of Rare Diseases Research (ORDR).  The GRDR collects patient clinical information without personal identifiers (de-identified information compiled by the federal common rule and HIPAA regulations) for research. Through the development of this registry database, ORDR will lead the community in establishing a shared resource of patient natural history information to accelerate research within a disease and across diseases. 

National DM & FSHD Registry

The National DM & FSHD Registry based at the University of Rochester is a separate registry from MDFR.  The U.S.-based National DM & FSHD Registry is focused on developing longitudinal, deep data records on DM patients to promote long-term DM understanding and discovery. 

United Kingdom

The UK Myotonic Dystrophy Registry exists to find patients potentially eligible for clinical trials; it provides a tool to be able to contact patients quickly and efficiently. Patients that are registered will be contacted if they meet the inclusion criteria of a clinical trial and can then decide if they wish to take part. 

Australia

The Australian Myotonic Dystrophy (DM1) Registry has been developed to collate a patient's DM1 gene sequence and clinical information about their disease. The Registry provides an important enabling tool for clinicians and clinical trial sponsors to quickly identify patients suitable for each study, particularly those therapeutic strategies that target specific genetic defects. Potentially eligible patients will be informed about new trials and studies through the Registry's clinical network. 

Bulgaria

The Bulgarian patient registry for Duchenne/Becker Musucular Dystrophy and Spinal Muscular Atrophy. Patient registry information is gathered by a self-report, by a report of a physician or both. This will expand to other neuromuscular disorders as well. The registries are designed for co-operation with the supra-national databases of TREAT-NMD and facilitate access to specialized care. 

Canada

The Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from patients across the country to improve the understanding of neuromuscular disease and accelerate the development of new therapies. For more information please visit the CNDR website or contact the CNDR National Office at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Czech Republic

The Czech patient registry Myotonic Dystrophy is located at the Masaryk University in Brno, where it was developed by the Institute of Biostatistics and Analyses. If you have any questions or wish to be registered, you can contact the registry at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it This e-mail address is being protected from spambots. You need JavaScript enabled to view it , or  This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

France

The French Registry for Myotonic Dystrophy is a national initiative in France that specialists caring for myotonic dystrophy patients contribute to. It is purely based on professional report during clinical consultations. Its overall aim is that of enabling the standardized characterization of the French DM1 population. Its objectives include clinical management, natural history, genotype-phenotype correlations, comparison of DM1 and DM2, comparison of prognostic factors, identification of homogeneous patient subgroups and recruitment for trials. For further information contact  This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Germany

As part of the international TREAT-NMD initiative, a national self-report and professional-report registry for all German DM (1 & 2) patients is being established in a collaboration between the expert neuromuscular clinical centres, MD-Net Germany and the Deutsche Gesellschaft für Muskelkranke. For further details contact  This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

New Zealand

The NZ Neuromuscular Disease Registry covers all neuromuscular conditions including Duchenne and Becker muscular dystrophies (DMD and BMD), spinal muscular atrophy (SMA), myotonic dystrophy (DM) and Charcot-Marie-Tooth disease (CMT). Please contact registry curator  This e-mail address is being protected from spambots. You need JavaScript enabled to view it  or visit the registry for further details.

Poland

The Polish Registry of Patients with Neuromuscular Diseases will concentrate first on patients with Duchenne muscular dystrophy (DMD), Becker muscular dystrophy (BMD) and spinal muscular atrophy (SMA). They will be followed by patients with myotonic dystrophy type 1 and 2 (DM1, DM2) respectively. 

If you have suggestions for other links that would be useful to participants in this Registry, please contact the Registry Coordinator at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it  to follow up.