Genetic Testing and ALS Study

Online Consent Form

Purpose of the Study

This study is being conducted by the ALS clinic team at the University of Chicago. The purpose of this study is to examine attitudes toward genetic testing in ALS and the effect of genetic testing on perception of the disease.

What Will Be Done

You are asked to participate in this study because you have registered as having been diagnosed with ALS.

You are asked to complete a survey that should take 15-20 minutes to complete. The survey is voluntary. The survey includes questions about demographics and history like age, family history, and genetic diagnosis. Your name and personally identifiable information will not be recorded. Other survey questions will address your attitudes about genetic testing as well as attitudes about advanced options in ALS.

Benefits of this Study

The information that you provide will help us better understand the psychosocial factors that go into a decision to pursue genetic testing as well as the psychosocial effects of genetic testing in ALS. Responses will be used to help improve counseling and use of genetic testing.

Risks of Participation

There is a chance one or more of the questions may upset you. If you feel uncomfortable with a question, you can skip that question or quit the survey altogether.


Your information is private and your answers will not be linked to your name or be shared with anyone else. Only our researchers will see individual survey responses and these responses will NOT be linked to your email or IP address.

You Can Quit at Any Time

Your participation is voluntary. You are free to quit at any time. If you do not want to continue, you can simply stop.

How the Data Will Be Used

These results will be presented in academic settings and may be published in a professional journal. Ultimately, we intend to use the results of this study, and others like it, to guide professional counseling around the ordering of genetic testing.

Contact Information

If you have any questions about the survey, please contact Dr. Raymond Roos ( or Dr. Kourosh Rezania (  

By beginning the survey, you acknowledge that you have read this information and agree to participate in this research, with the knowledge that you are free to withdraw your participation at any time without penalty.


Question Title

* 1. Would you like to proceed with the survey?