What You Need to Know about Registries

Many questions about neuromuscular diseases remain unanswered. Scientific advances in recent years have improved treatment but not managed to cure these diseases. New treatments are emerging, and clinical studies and research plans calling for patient participation are currently in development.

When medical researchers plan a clinical trial, they must find good subjects and contact them quickly. Often, not enough people with neuromuscular diseases live nearby a specific center to enable researchers there to conduct a trial. Finding subjects nearby may help clinical trials to begin sooner.

That’s where registries come in. Registries link researchers and DMD patients – enabling faster communication and recruitment for clinical trials.

Canadian Neuromuscular Disease Registry (CNDR)

Led by the University of Calgary, the Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from Canadians with neuromuscular diseases to better our understanding of these disorders and speed the development of new therapies. The four-year-old registry has recruited 2,000 patients from across Canada.

Learn more at http://www.cndr.org/

TREAT-NMD

TREAT-NMD maintains a European registry. Its database is located in Marseille, France. TREAT-NMD receives coded medical information from registries around the world, including the NDRC.

If you give your consent, the NDRC will send a copy of your medical record to the TREAT-NMD database. It will be very useful to researchers worldwide. TREAT-NMD will never have access to your name or other personal information. A secret number will be assigned to your medical information. You can still participate in the NDRC if you do not want to share your medical information with TREAT-NMD.

Who will inform me about research opportunities and clinical trials?

If you’re a potential candidate for a research study, the CNDR will send you a letter. It will contain information about the study, and it will give you the name of the person to contact if you want to participate.

The CNDR will never give out your name or personal information. If you wish to participate in a clinical trial, you will need to contact the researcher yourself. He or she will give you all of the information that you need to decide whether or not to join the study.

If you agree to take part, you will need to read and sign a consent form, provided by the research team. You are free to choose or not choose to participate in any study that the CNDR brings to your attention. If you decide not to participate, the CNDR will still keep your name in the registry. You will continue to receive information on other studies unless you advise the CNDR otherwise. The fact that the CNDR is contacting you about a study does not necessarily mean that it supports it. It’s up to you to do your homework!