The Myotonic Dystrophy Clinical Research Network (DMCRN)
The Myotonic Dystrophy Clinical Research Network (DMCRN) is a global group of leading medical research centers working together to study and treat myotonic dystrophy (DM).
Building a better future for DM research, trials, and treatment
The Myotonic Dystrophy Clinical Research Network (DMCRN) is a global group of leading medical research centers working together to study and treat myotonic dystrophy (DM), a genetic condition that includes two main types: DM1 and DM2. Launched in 2013 with support from the Myotonic Dystrophy Foundation (MDF), the DMCRN includes over 20 research sites around the world. It plays a key role in preparing for clinical trials, understanding disease progression, and creating standardized tools to study DM.
What the DMCRN Does
Supports Clinical Trials
Builds consistent, high-quality trial sites across institutions.
Tracks Disease Progression
Conducts long-term studies to understand how DM changes over time.
Develops Research Tools
Creates better ways to measure symptoms and identify biomarkers.
Promotes Global Collaboration
Encourages international research teams to share data and resources.
The DMCRN's founding leadership
The DMCRN was founded in 2012 in response to concerns from DM researchers about clinical trial site readiness, standardization of laboratory procedures, and infrastructure needed to match the rapid pace of drug development. With foundational support from MDF and a consortium of academic and industry partners, the University of Rochester—led by Dr. Charles Thornton—spearheaded the creation of the DMCRN.
Dr. Thornton, a world-renowned and highly respected clinician-researcher at the University of Rochester Medical Center, played a central role in establishing the Network’s collaborative model to accelerate clinical trial readiness and therapeutic development. For 15 years, he served as Chair of MDF’s MDF’s Scientific Advisory Committee (SAC) and continues to help guide the Foundation’s research direction.
"The DMCRN makes it possible to run large, coordinated clinical studies that are essential to understanding and treating myotonic dystrophy. By supporting natural history studies, the network helps identify people for clinical trials and discover biomarkers that move us closer to effective therapies."
Dr. Nicholas Johnson, DMCRN Principal Investigator, Virginia Commonwealth University, and MDF Scientific Advisory Committee Member
Study Contacts
- Ruby Langeslay, ruby.langeslay@vcuhealth.org
- Jennifer Raymond, jennifer.raymond@vcuhealth.org
United States
- University of California, Los Angeles (UCLA) – Los Angeles, CA
- University of California, San Diego (UCSD) – San Diego, CA
- Stanford University School of Medicine – Stanford, CA
- University of Colorado Anschutz Medical Campus – Aurora, CO
- University of Florida, McKnight Brain Institute – Gainesville, FL
- University of Iowa Hospitals & Clinics – Iowa City, IA
- University of Kansas Medical Center Research Institute – Kansas City, KS
- University of Rochester Medical Center – Rochester, NY
- The Ohio State University Wexner Medical Center – Columbus, OH
- Houston Methodist Research Institute – Houston, TX
- UT Health San Antonio – San Antonio, TX
- Virginia Commonwealth University (VCU) – Richmond, VA
International
- Centro Clinico NeMO – Milan, Italy
- Osaka University – Osaka, Japan
- Radboud University Medical Center – Nijmegen, Netherlands
- Friedrich-Baur-Institute, Ludwig-Maximilians-University – Munich, Germany
- University College London Hospitals (UCLH) – London, UK
- St George’s University Hospitals – London, UK
- Auckland City Hospital – Auckland, New Zealand
- Université de Sherbrooke – Sherbrooke, QC, Canada
Global DMCRN research sites
The following sites are part of the DMCRN. Some are actively recruiting for specific studies. Please check the DMCRN site directory or reach out to the study contacts to learn more about participation opportunities.
Current studies in the DMCRN
While the DMCRN is committed to supporting research across both DM1 and DM2, the active studies listed are specific to DM1 populations.
Adult DM1 Study: END-DM1
This study aims to identify reliable ways to measure symptoms and track the effectiveness of new DM1 treatments.
- Who Can Join: Adults aged 18–70 with confirmed DM1
- What to Expect:Â Four visits over 24 months that may include physical exams, muscle strength tests, blood work, and cognitive assessments. Some participants may be asked to provide a small, optional muscle sample (smaller than a pea) if they feel comfortable.
- Why It Matters:Â Helps researchers design better, faster clinical trials
Pediatric DM1 Study: ASPIRE-DM1
This study focuses on young children living with congenital or childhood-onset DM1. Researchers are working to find the best ways to measure how treatments help children over time.
- Who Can Join:Â Children from birth to 4 years and 11 months with CDM (congenital DM) or ChDM (childhood-onset DM)
- What to Expect:Â Four visits over 18 months including developmental assessments, motor and cognitive testing, and feedback from parents or caregivers.
- Why It Matters:Â Supports future trials focused on pediatric treatment options
Support DM research or get involved in a study
Official DMCRN website
View up to date network information from the official DMCRN website.
Join the Family Registry
Help provide an understanding of DM by joining the Myotonic Dystrophy Registry.
Find a DMCRN study site
Reach out to the study contacts to learn more about participation opportunities.
