University of Manitoba | Caregivers of Children with Rare Genetic Diseases Study
Eligibility to complete this survey has expanded to include a bigger range of caregivers! You are now eligible to complete the survey using the link below if you are the primary caregiver to a child with one of the following:
A rare disease diagnosed in 2018 or after (2018 to present)
A suspected rare disease who has gotten a genetic test in 2018 or after (2018 to present)
You have interacted with a Canadian clinical geneticist or genetic counsellor during your child’s diagnostic journey
You can complete a written online survey in English, French, or Simplified Chinese
If you were previously screened out of the survey but meet this new criteria and would still like to participate you can!
We anticipate that the survey will require approximately 15-20 minutes of your time and is available to complete in English, French, and Simplified Chinese. If you would like to complete the survey in more than one sitting, you will have the option of using a ‘return code’ to save your responses and return to the same survey later.