Personal Growth Scale for Family Caregivers
The purpose of this research study is to learn about how families of individuals with Hereditary Ataxia (HA) experience positive outcomes as a result of being caregivers. The objective of this study is to develop a scale to measure positive emotions in caregiving family members of persons with HA.
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
Hereditary Ataxia
Type of Study
Survey
Age Range
18+
Study Start Date
11/04/25
Estimated Completion Date
09/30/2026
IRB Approval #
i25-00970 (exempt status)
Location(s)
Contact Information
Sonya Kim PhD, CRC, FACRM
New York University Grossman School of Medicine
Email: sonya.kim@nyulangone.org
Phone: 212-263-4849
What does participation in the study entail?
Participation involves completing an online survey in an electronic platform called REDCap.
• Participation will last approximately 15 minutes.
• Your participation is entirely voluntary and anonymous.
What are the potential benefits or risks for participants?
You may or may not benefit personally from being in this study. However, we hope that, in the future,other people might benefit from this study because this study seeks to advance scientific knowledge about understanding positive emotions of being a family caregiver≥
Is there financial compensation?
No.
Is there travel reimbursement?
Not applicable.
Who is eligible?
A family caregiver of a person with hereditary ataxia (HA). You are eligible to take part in this study if you 1) are at least 18 years old, 2) are currently living in the United States (U.S.), 3) have been a family caregiver of a person with HA for at least 12 months, regardless of whether you live with the person or not, 4) have proficiency in English sufficient to complete study survey (8th grade reading level).
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