Dear Duchenne Family,
On behalf of Stand for Duchenne Canada, Jesse’s Journey and La Force DMD, thank you for your interest in participating in this survey for Canadian families living with Duchenne Muscular Dystrophy (DMD).
The purpose of this survey is to gather vital information to submit to Health Canada, describing the impact Duchenne has on the lives of those living with and caring for this rare disease. Currently, there is no way for caregivers and people with DMD to let Health Canada know this. We feel it is critical that this information is considered when therapies are under review with Health Canada. Currently, there are therapies for DMD approved in Europe and the US that have not yet been approved in Canada.
Learn more on the approval process in Canada
How are drugs approved for use in Canada? • The approval process for new drugs
It’s crucial for our DMD community to help Health Canada understand why we don’t have time to wait for these new treatment options to become available.
We request that you complete the survey at your earliest convenience as it will be closing on August 2, 2019. This survey should take about 30 minutes to complete. If you are a caregiver for more than one person with DMD, please complete this survey for each.
By agreeing to complete this survey, you consent to allow Stand for Duchenne, Jesse’s Journey and La Force DMD to publish a summary of all the data collected in this survey of which your personal and medical information will be anonymized. The individual information that we collect from this survey will be kept private.
In addition to this online survey, we are also conducting telephone interviews. The interview is vital for us to collect important additional information about your preferences that we would not be able to collect in this survey. All your personal information will continue to remain anonymous. If you are interested in participating in a 15-minute telephone interview and/or interested in getting more involved in advocating to ensure the DMD voice is being heard, please send an email to nicola@duchennecanada.org.
On behalf of Stand for Duchenne Canada, Jesse’s Journey and La Force DMD, thank you in advance for your engagement. If you have any questions about this survey, please contact Nicola Worsfold at nicola@duchennecanada.org. All conversations will remain confidential.
Thank you for your interest in participating in this survey for Canadian families living with Duchenne Muscular Dystrophy
Stand for Duchenne • Jesse’s Journey • La Force DMD
