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Who can join the registry?
What information do I need to provide?
Who will collect my information?
Who has access to my information?
Will joining the registry affect my normal medical care?
Can I participate in research studies if I join the registry?
I don't want to participate in clinical trials, can I still be involved in the registry?
What if I want to withdraw?
What if I move or change my name?
Can I register someone else?
What about my children?
What happens when I reach the age of majority?
Is there a cost to joining the registry?
What if my disease is not currently included in the registry?
What if my doctor/clinic is not participating in the registry?
What are the risks?
I might be in another registry: can I still sign up?
Where can I learn more?
Who can join the registry?
The CNDR is for people with a diagnosed neuromuscular disease. You must have a Canadian mailing address.
What information do I need to provide?
Your doctor can show you the form used to collect your information. The form will be used to collect your name and contact details, and diagnosis. Your doctor may also provide your genetic test results, results from your breathing tests or heart tests. Your doctor may include information on the medications you take.
Who will collect my information?
After you have provided your consent, your doctor will submit specific medical information from your regular medical visits and your current medical record.
Who has access to my information?
When the CNDR receives your information, all your personal information is separated from your medical information. Your medical information is given a number. This number helps to keep your identity a secret. A list will keep track of your personal information and the secret number assigned to you. Only your doctor and the CNDR staff will have access to this list. Only your doctor and the CNDR staff will be able to see your personal and medical information together.
Will joining the registry affect my normal medical care?
The care you receive regularly from your doctor will not change. You will not need to make any additional visits to the doctor.
Can I participate in research studies if I join the registry?
If you tell us you are interested in participating in research studies we will send you a letter if you are identified as a possible participant. The letter will include information about the study and who you can contact if you want to participate. If you decide you are interested in the study you will contact the researcher. You are free to make your own choice about any study that you are informed about. If you decide not to participate 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. Your medical information may also be combined with other people's information to assist researchers who are planning studies.
I don't want to participate in clinical trials, can I still be involved in the registry?
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 research opportunities 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.
What if I want to withdraw?
Your participation in the CNDR is completely voluntary. You are able to leave the registry at any time. If you decide to leave, you can choose to stop adding new information to the CNDR. You can also choose to have all your information removed. If you want to withdraw from the CNDR you do not have to give a reason. Your choice to withdraw will not affect your current or future health care. If you want to withdraw, you can tell your doctor or contact the CNDR manager at 1-877-401-4494 or admin@cndr.org
What if I move or change my name?
Please let your doctor know your new address or name change so that this information can be updated in the registry.
Can I register someone else?
No, you cannot register someone other than yourself unless they are a minor under your care, but you can always request the information and pass it along for them to consider.
What about my children?
Participation from all ages is encouraged, but for minors a parent or legal guardian must first provide consent for the child to be involved in the registry.
What happens when I reach the age of majority?
If you are reaching the age where you become an adult in your province you will be given information outlining your participation in the registry. If you agree to continue you will be asked to complete an Adult Consent Form. Your medical data will continue to be entered as usual. If you choose not to participate you can opt to withdraw as above.
Is there a cost to joining the registry?
Participation is entirely voluntary: there is no cost to you for participating in the registry nor will you be paid for your participation.
What if my disease is not currently included in the registry?
Diseases will be added to the indexed diseases list one by one over a period of time. If your disease is not currently included on the list of indexed diseases, with your consent, your name, contact details and diagnosis can be added to the registry. When the CNDR begins more detailed data collection in your particular neuromuscular disease you will be contacted and provided with all the forms and information needed to get started. We will also keep you informed if any research opportunities arise.
What if my doctor/clinic is not participating in the registry?
We always recommend that you contact the participating clinic nearest you to see if it is possible to be seen and registered through them. If you are not able to register through a participating clinic, please contact the CNDR National Office and we will work with you to get you registered.
What are the risks?
There are no risks to your physical health from participating in the CNDR. No procedures or treatments are required to be part of the CNDR. You do not need to make any extra visits to your doctor. There is a possible risk for a loss of privacy if a breakdown in the CNDR security system occurred. Everything possible will be done to prevent this risk.
I might be in another registry: can I still sign up?
Yes, you can still sign up. There is no problem if you are participating in other registries or databases. In fact one of the goals of the CNDR is to connect with other databases where possible. Just let your doctor know if you think you are in another registry so you are not double-counted.
Where can I learn more?
Your doctor can usually answer any questions you may have about participation in the registry. If you still have questions, you are encouraged to contact the CNDR directly.
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