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 Many questions about neuromuscular disease remain unanswered. Scientific advances in recent years have led to changes in the treatments but there is still no cure. New therapies are being developed and plans for research studies with patients are evolving. When researchers are planning a study, suitable patients need to be found and contacted quickly. Often there are not enough patients in a single centre to host a trial. Finding patients nearby may help a trial get going faster. A registry can help by locating all patients near to a particular centre.
Researchers who want to access your information will have to get permission. First, their study will have to be reviewed and approved by their local ethics board. Next, their study will be reviewed by the CNDR Advisory Committee. The CNDR Advisory Committee is a group of doctors and scientists from all over Canada. If the CNDR Advisory Committee recommends the study be approved, your information identified only by your secret number will be released. Researchers will never have access to your medical information without CNDR and ethics approval. No researcher will ever have access to your personal information.
TREAT-NMD
There is a registry in Europe being run by a group called TREAT-NMD. The TREAT-NMD database is based in Marseille, France. They are collecting coded medical information from registries like the CNDR around the world. If you provide your consent, the CNDR will send a copy of your medical information to the TREAT-NMD database. This will help researchers all over the world. TREAT-NMD will never know your name or other personal information. Your medical information will only be identified by your secret number. You can still participate in the CNDR even if you don't want to have your medical information sent to TREAT-NMD.
How Will I Find Out About Research Opportunities and Clinical Trials?
If you are identified as a possible participant for a research study, the CNDR will send you a letter. The letter will include information about the study and who you can contact if you want to participate. You will never be contacted by the study. Your name and other personal information will never be given to anyone outside the CNDR. If you decide you are interested in the study you will contact the researcher. The researcher will give you all the information you need to decide if you would like to participate in the study. If you choose to take part in a study, you will need to read and sign a separate consent form provided by the study. You are free to make your own choice about any study that you are informed about. If you decide not to take part in a study, your information will still be kept in the CNDR. You will continue to receive information about other studies unless you tell the CNDR you don't want to. If the CNDR tells you about a study, it does not mean the CNDR endorses it.
If I Join the Registry Does it Guarantee I Will Participate in Research?
There is no guarantee that you will be involved in research. While one goal of the CNDR is to make it easier for patients to be found for research, there is no guarantee that joining the CNDR will involve you in a study. You must also understand that if researchers think that you might be a suitable participant based on your medical information, it is possible that later on you may not qualify.
I Don't Want to Be Involved in Clinical Trials. Should I Still Register in the CNDR?
If you join the CNDR your medical information may be combined with other people's information to assist researchers who are planning studies. Your personal information is never given out. You can tell us not to tell you about research opportunities you may be suitable for. Even if you don't want to participate in clinical trials your information will still be useful to researchers who are trying to find out more about people living with neuromuscular disease. We hope you will be interested in registering even if you don't want to take part in clinical trials.
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