Researchers at the University of Manitoba invite you to participate in a study on the experience of caregivers of children with rare genetic diseases. The goal of this study is to understand the experiences, needs, and preferences of parents/caregivers of children with rare genetic diseases when speaking to genetics professionals during the diagnostic journey. The researchers want to learn about where caregivers seek information and support during and after the diagnostic journey and the factors that might influence these preferences. They hope the study results will help them understand how genetics healthcare providers can provide better support to caregivers.
You are eligible to complete the survey if:
1. You are the primary caregiver to a child with one of the following:
a. A rare disease diagnosed in 2018 or after (January 2018 - present)
b. A suspected rare disease who has gotten a genetic test in 2018 or after (January 2018 - present)
2. You have interacted with a Canadian clinical geneticist or genetic counsellor during your child's diagnostic journey
3. You can complete a written online survey in English, French, or Simplified Chinese
If you would like to participate in this study, please complete the pre-screening survey by clicking on this link or entering https://redcap.link/rd-caregiver into your web browser. If you are eligible to participate in the main study, a link to the main survey will be sent to the email you provide within 24 hours.
The main 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.
If you would like more information about this study, contact Vivien at truongv2@myumanitoba.ca.
This study closes January 31, 2024.
This study has been approved by the Bannatyne Health Research Board: HS26049