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Telling the children: Disclosure challenges and support needs of parents with children at risk for Huntington Disease
Participants needed to complete online survey for Huntington Disease (HD) Study
Purpose: This research will study the challenges that parents face in telling their children about their own risk for HD as well as identifying support resources used and found helpful for parents.
You are eligible to participate if:
You have received a positive genetic test result for HD and you have at least one biological child under the age of 21 years old
You are also eligible to participate if:
Your current or former spouse/partner has received a positive genetic test result for HD and has at least one biological child 21 years of age or younger. In this study, we define a spouse/partner as a current or previous spouse or common-law partner who shares children with someone who has received a positive genetic test result for HD. As a spouse/partner, these children may be your biological children as well or they may not be your biological children but you play a parenting role. In either case, we welcome your participation.
- If you are eligible, then you are invited to complete a survey about the challenges you faced, or are currently facing, in deciding to tell your children about HD.
- This survey will also ask questions about the resources you found helpful and where you think you could use more support in helping you with these decisions.
- You can complete the survey online at the following weblink: https://www.surveymonkey.com/s/TellingTheChildrenStudy.
- This survey is anonymous. Participation is this study completely voluntary. Completion of the survey will take approximately 20 minutes.
If you have any questions or concerns, feel free to contact Jennifer Semotok or Clare Gibbons at the email addresses or phone numbers listed below. Thank you for your participation.
Jennifer Semotok, BSc, PhD Clare Gibbons, MS, CCGC, CGC
MSc Candidate, Genetic Counselling Genetic Counsellor
University of Toronto HD Genetics Clinic, North York General Hospital
Phone: 416-813-5331 Phone: 416-756-6788