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Understanding the Spectrum of SCA1, SCA2, SCA3, SCA6 Through the Eyes of Patients and Caregivers

Understanding the Spectrum of SCA1, SCA2, SCA3, SCA6 Through the Eyes of Patients and Caregivers

Biohaven Pharmaceuticals is now enrolling patients and spouses/parent/caregiver in a research study of patients and families affected by SCA. The study is regarding the burden of SCA types 1, 2, 3, or 6 on the patient’s life. The study will include participants who speak English, German, French or Portuguese.

Find out more information and whether you’re eligible by visiting: www.engagehealth.com/survey/TakeSurvey.aspx?SurveyID=76KJ3n8L#

 

About the Study

Eligible Ataxia Types
SCA1, SCA2, SCA3, SCA6

Type of Study
Research Study

Clinical Trial Phase
N/A

Age Range
Adult 18+

Study Start Date
12/30/2022

Estimated Completion Date
03/03/2023

IRB Approval #
20226771
(WCG IRB Tracking Number)

Location(s)

Engage Health

Remote – Telephone Interview

Contact Information

Patti Engel
pengel@engagehealth.com
612-940-7852

Skyler Jackson
sjackson@engagehealth.com
913-633-7524

What does participation in the study entail?

All study participants will complete the consent, the RSVP, and upload a proof of disease form, which will be followed by a recorded interview conducted by a trained interviewer in the participant’s native language. It is estimated that each respondent will need up to 2 hours for the entire process; 20-30 minutes to complete the RSVP which includes the SF-36, and to upload a document that ties their name to the diagnosis of SCA1, SCA2, SCA3, or SCA6 and approximately 90 minutes to complete the interview which includes questions modified from the PROM-Ataxia.

What are the potential benefits for participants?

Research participants may not benefit directly from this research; however, it is hoped that participation in the study will provide a better medical understanding of the ways that the various SCAs impact patients and families in terms of disease burden and quality of life.

What are the potential risks for participants?

This research study is not associated with any known risks; time to complete the RSVP and interview may be a possible inconvenience. Each respondent will need up to 2 hours (120 minutes) to complete the entire process; 20-30 minutes to complete the RSVP including completing the proof of SCA diagnosis along with specific SCA type, and approximately 90 minutes to complete the interview and address any follow-up questions if needed.

Is there financial compensation?

Yes. $200.

Is there travel reimbursement?

No. Not applicable.

Who is eligible?

1. Participant must be a person who has symptoms and has been diagnosed with SCA1, SCA2, SCA3 or SCA6

or

2. The spouse/parent/caregiver of a person who has symptoms and has been diagnosed with SCA1, SCA2, SCA3, or SCA6. Please note, spouses/caregivers of patients with SCA who have passed away may participate if the patient has passed away within the 2 years preceding the study

3. Confirmed diagnosis of SCA with written proof of disease and specific SCA type provided

4. Able to grant informed consent and participate in the RSVP and 90-minute interview in English, French, German or Portuguese irrespective of country of residence

 

Additional Information or Resources

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

Biohaven Pharmaceuticals is now enrolling patients and spouses/parent/caregiver in a research study of patients and families affected by SCA. The study is regarding the burden of SCA types 1, 2, 3, or 6 on the patient’s life. The study will include participants who speak English, German, French or Portuguese.

Find out more information and whether you’re eligible by visiting: www.engagehealth.com/survey/TakeSurvey.aspx?SurveyID=76KJ3n8L#

 

About the Study

Eligible Ataxia Types
SCA1, SCA2, SCA3, SCA6

Type of Study
Research Study

Clinical Trial Phase
N/A

Age Range
Adult 18+

Study Start Date
12/30/2022

Estimated Completion Date
03/03/2023

IRB Approval #
20226771
(WCG IRB Tracking Number)

Location(s)

Engage Health

Remote – Telephone Interview

Contact Information

Patti Engel
pengel@engagehealth.com
612-940-7852

Skyler Jackson
sjackson@engagehealth.com
913-633-7524

What does participation in the study entail?

All study participants will complete the consent, the RSVP, and upload a proof of disease form, which will be followed by a recorded interview conducted by a trained interviewer in the participant’s native language. It is estimated that each respondent will need up to 2 hours for the entire process; 20-30 minutes to complete the RSVP which includes the SF-36, and to upload a document that ties their name to the diagnosis of SCA1, SCA2, SCA3, or SCA6 and approximately 90 minutes to complete the interview which includes questions modified from the PROM-Ataxia.

What are the potential benefits for participants?

Research participants may not benefit directly from this research; however, it is hoped that participation in the study will provide a better medical understanding of the ways that the various SCAs impact patients and families in terms of disease burden and quality of life.

What are the potential risks for participants?

This research study is not associated with any known risks; time to complete the RSVP and interview may be a possible inconvenience. Each respondent will need up to 2 hours (120 minutes) to complete the entire process; 20-30 minutes to complete the RSVP including completing the proof of SCA diagnosis along with specific SCA type, and approximately 90 minutes to complete the interview and address any follow-up questions if needed.

Is there financial compensation?

Yes. $200.

Is there travel reimbursement?

No. Not applicable.

Who is eligible?

1. Participant must be a person who has symptoms and has been diagnosed with SCA1, SCA2, SCA3 or SCA6

or

2. The spouse/parent/caregiver of a person who has symptoms and has been diagnosed with SCA1, SCA2, SCA3, or SCA6. Please note, spouses/caregivers of patients with SCA who have passed away may participate if the patient has passed away within the 2 years preceding the study

3. Confirmed diagnosis of SCA with written proof of disease and specific SCA type provided

4. Able to grant informed consent and participate in the RSVP and 90-minute interview in English, French, German or Portuguese irrespective of country of residence

 

Additional Information or Resources

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
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