Study: Experiences of Canadian caregivers of children with rare diseases

Study Information

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 while interacting with genetics professionals during the diagnostic journey. We want to learn about where caregivers seek information and support during and after the diagnostic journey and the factors that might influence these preferences. We hope the study results will give us a better understanding of how genetics healthcare providers can provide better support to caregivers.

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.

Fill out the pre-screening survey by visiting www.redcap.link/rd-caregiver to receive a link to participate or see poster for more info.