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Reproductive Education for Patients with Spinocerebellar Ataxia

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

View Other Research Opportunities

PRIME-Ataxia RCT

This study aims to determine the feasibility and efficacy of an 8-week remote intervention of high intensity aerobic exercise prior to balance training compared to an 8-week remote intervention low Read More…

Print Friendly, PDF & Email
Read More »
Print Friendly, PDF & Email

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

View Other Research Opportunities

PRIME-Ataxia RCT

This study aims to determine the feasibility and efficacy of an 8-week remote intervention of high intensity aerobic exercise prior to balance training compared to an 8-week remote intervention low Read More…

Print Friendly, PDF & Email
Read More »
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