To Test or Not to Test: Exploring Predictive Genetic Testing Decision Making in Individuals with a Family History of Hereditary Ataxia
Our research goal is to further explore the factors influencing participants’ predictive genetic testing decision-making for hereditary ataxia. We will achieve this by interviewing participants who declined genetic testing as well as participants who underwent genetic testing and received positive results. By comparing the two groups of participants to each other we can assess similarities and differences among groups. We aim to provide insight for healthcare providers caring for patients with a family history of hereditary ataxia and guide resource development for these patients.
Disclaimer: This research opportunity is not affiliated with NAF. We are sharing this information as a resource for the Ataxia community. Sharing this information does not imply endorsement by NAF.
About the Study
Eligible Ataxia Types
All forms of hereditary ataxia
Type of Study
Research Study
Age Range
Adult 18+
Study Start Date
12/18/2025
Estimated Completion Date
02/28/2026
IRB Approval #
2025P002882
Location(s)
MGH Institute of Health Professions
Charlestown Navy Yard, 36 1st Avenue
Charlestown, MA
Contact Information
Anne Rockwood
arockwood@mghihp.edu
339-204-3303
What does participation in the study entail?
Participants will first complete a ten-minute online survey through REDCap. The survey will collect demographic information, contact information in order to schedule an interview, and information on the participants’ prior personal and/or familial genetic testing results, prior genetic counseling sessions if any, and any onset of symptoms among other questions. Participants who agree to be interviewed will be asked questions pertaining to their genetic testing decision-making, discussions with healthcare professionals, impact of their decision on their mental health, their assessment of genetic risk, and caregiving experience. Participants who complete both the survey and interview will receive compensation in the form of a $20.00 electronic gift card.
What are the potential benefits/risks for participants?
There is no direct benefit from participating in this study. However, the insights gained from this study may guide future research and educational materials for those with a family history of hereditary ataxia. This study will involve minimal risks to participants. Potential psychosocial risks include discomfort when discussing predictive genetic testing decision-making.
Is there financial compensation?
Yes, $20
Is there travel reimbursement?
No
Who is eligible?
Individuals are eligible to participate in this research study if they (1) are 18 years of age or older
(2) have at least one relative affected by a genetically confirmed form of ataxia (3) have access to an electronic device (computer, phone, tablet) with internet and (4) currently live in the United States (5) have either declined genetic testing for hereditary ataxia or underwent genetic testing and received positive results.
Additional Information or Resources
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