programs & services >> Paediatric Neurology >> Myotonic Dystrophy Research

William Singeris National Centre for Myotonic Dystrophy Research French version

The main activity of the William Singeris National Centre for Myotonic Dystrophy Research is creating a Canadian natural history cohort study for children with Congenital Myotonic Dystrophy.

Welcome families and physicians!

This site is designed to provide information to the families enrolled in the study. There are several different parts to our study which you have enrolled in. Below are links that explain each part of the study so that you and your family can better understand the importance of this research and ensure that you remain updated about changes or new information regarding each part of the study. As time passes we hope to provide links to different resources about Myotonic Dystrophy, especially Congenital Myotonic Dystrophy.

New Information for Families

Glossary (pdf format)
Breakdown of Childhood Muscle Diseases (pdf format)
Art Work Project

Our Team

There are many highly experienced health professionals who have put a lot of time and effort into preparing this study to provide leading edge research, in hopes of providing you and your family with better resources, better health care and in general a better understanding of this disorder.

Dr. Craig Campbell - Pediatric Neurologist, MD, FRCPC (pediatrics), FRCPC (neurology), MSc
Dr. Simon Levin - Pediatric Neurologist, MD, FRCPC
Dr. Shannon Venance - Adult Neurologist, MD, FRCPC, PhD
Dr. Victoria Siu - Clinical Geneticist, MD, FRCPC, FCCMG
Dr. Pierre Jacob - Pediatric Neurologist (Children's Hospital of Eastern Ontario), MD, FRCPC
Sandra Magalhaes - Research Assistant

All these doctors are all interested in providing better care for all children diagnosed with congenital myotonic dystrophy across Canada and ultimately worldwide.

If you have any questions or comments regarding any part of this study please feel to contact us, we would love to hear from you. Our e-mail address is CDMresearch@lhsc.on.ca and phone number is: 1-866-226-8003 or locally (519) 685-8441.

Letter of Information for families (pdf format).