Information Sheet

Emory University
Information Sheet
For a Research Study
 

Study Title: Spinocerebellar Ataxia (SCA) Patients’ Perceptions Regarding Reproductive Options
Principal Investigator: George Wilmot, MD, PhD, Emory Department of Neurology

Introduction and Study Overview
 
Thank you for your interest in our spinocerebellar ataxia research study. We would like to tell you everything you need to think about before you decide whether or not to join the study.  It is entirely your choice. If you decide to take part, you can change your mind later on and withdraw from the research study.

1)      The purpose of this study is to evaluate the opinions of people with SCA towards reproductive options.

2)      This study will take about 15 minutes to complete.

3)      If you join, you will complete a questionnaire through SurveyMonkey. You will complete the survey only once. You will be asked to answer survey questions about reproductive options and the genetic risk of SCA.

4)      There are a limited number of knowledge-based questions, but we do not anticipate that these will be overly burdensome. You could grow tired from answering questions. You could also feel uncomfortable answering certain questions. Participation is not mandatory, and you may skip any questions that you do not wish to answer. There is a risk of breach of confidentiality. To minimize this risk, participants will be assigned a random identifier when they are enrolled in the study.

5)      This study is not designed to benefit you directly. There is no payment for the study. The study results may be used to help others in the future.

6)      The survey responses may be used for future research.

7)      Your privacy is very important to us.

8)      You may choose to withdraw from the study at any time. As this study is deidentified, the study team may not be able to extract or delete any specific data provided, should you choose to withdraw from the study.

If you have questions about this study, your part in it, your rights as a research participant, or if you have questions, concerns or complaints about the research you may contact the following:

Suzy Cahn, Study Coordinator: suzy.cahn@emory.edu or 404-778-8536
Rebecca McMurray, Study Coordinator: 404-712-7013.
Emory Institutional Review Board: 404-712-0720 or toll-free at 877-503-9797 or by email at irb@emory.edu

 

Consent
 
By clicking “NEXT” you agree that you have read this information sheet and are willing to complete the following survey.
By clicking “NEXT”, you will not give up any of your legal rights.

If you do NOT wish to participate in this study, please close the survey.

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