Reproductive Education for Patients with Spinocerebellar Ataxia
The purpose of this study is to evaluate how helpful an educational tool is for SCA patients who are interested in family planning options.
Link to enroll: Click here
About the Study
Eligible Ataxia Types
SCA1, SCA2, SCA3, SCA6, SCA7, SCA8, SCA17, and SCA48
Type of Study
Research Study
Clinical Trial Phase
N/A
Age Range
Adult 18+
Study Start Date
06/19/2023
Estimated Completion Date
07/01/2024
IRB Approval #
00005678
Location
Emory University & Georgia Association of Genetic Counselors
Remote study
Contact Information
Megan Howard
megan.howard@emory.edu
847-532-0872
What does participation in the study entail?
Participants will be asked to fill out two surveys. These surveys will include questions about your SCA diagnosis, family history, pregnancy / parenting history, and knowledge questions about different family planning options. Additionally, participants will be asked to read a handout on family planning options. The study will take about one hour to complete.
What are the potential benefits for participants?
A benefit is that you may gain knowledge about family planning options for patients with SCA.
What are the potential risks for participants?
Some of the risks of this study include minor discomfort, loss of privacy, and breach of confidentiality.
Is there financial compensation?
Yes. $25 Amazon e-gift card.
Is there travel reimbursement?
No. No travel necessary – remote participation.
Who is eligible?
Individuals with a diagnosis of SCA1, SCA2, SCA3, SCA6, SCA7, SCA8, SCA17, or SCA48 who are between the ages of 18 and 50 are eligible for our study. Participants must be able to read English and have access to the internet and a device compatible with our educational intervention and survey.
Link to Enroll
emorymedicine.sjc1.qualtrics.com/jfe/form/SV_cwjWoUhJ8wPZadM
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