Participate in Clinical Research
Date posted: May 5, 2023
Developing the Patient-reported Genetic testing Utility InDEx (P-GUIDE)
Study description:
We are developing a checklist to measure how parents/caregivers value genetic testing. This checklist may help provide evidence to guide funding decisions and access to genetic tests for children.
Enrolling:
Closed
Who can participate:
We are recruiting parents/caregivers.
You may be eligible if:
- Your child has a neurodevelopmental condition (thinking, communication, behaviour and/or movement challenges)
- Your child received genetic test results from a doctor or genetic counsellor in Canada in the last 12 months
- You are comfortable communicating in English
Participation involves:
- 10 min eligibility and consent virtual call
- 15-20 min online questionnaire about
your experience with genetic testing
Participants will receive a $15 gift
card in appreciation of their time
Principal investigator:
Hayeems, Robin
Official study title:
(CTO) Defining and measuring the value of genetic testing from patients' perspectives: Developing the Patient-reported Genetic testing Utility InDEx (P-GUIDE)
Interested in participating in this study?
Contact name:
Elise Poole
Telephone:
416-813-7654 x 328163
Email:
Study posting
| Study title: | Developing the Patient-reported Genetic testing Utility InDEx (P-GUIDE) |
|---|---|
| Study description: | We are developing a checklist to measure how parents/caregivers value genetic testing. This checklist may help provide evidence to guide funding decisions and access to genetic tests for children. |
| Enrolling: |
Closed
|
| Recruitment information: | We are recruiting parents/caregivers. You may be eligible if: - Your child has a neurodevelopmental condition (thinking, communication, behaviour and/or movement challenges) - Your child received genetic test results from a doctor or genetic counsellor in Canada in the last 12 months - You are comfortable communicating in English Participation involves: - 10 min eligibility and consent virtual call - 15-20 min online questionnaire about your experience with genetic testing Participants will receive a $15 gift card in appreciation of their time |
| Date posted: | 2023-05-05 |
| Principal investigator: | Hayeems, Robin |
| Official study title: | (CTO) Defining and measuring the value of genetic testing from patients' perspectives: Developing the Patient-reported Genetic testing Utility InDEx (P-GUIDE) |
Interested in participating in this study?
| Contact name: | Elise Poole |
|---|---|
| Telephone: | 416-813-7654 x 328163 |
| Email: | pguide.study@sickkids.ca |