MSA Research Registry Questionnaire
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Acknowledgement

You are being asked to read this information sheet because you may have been diagnosed, or have a child or loved one who was diagnosed, with Multiple System Atrophy (MSA). Our registry is for patients or family members that may be interested in participating in one of our research studies.

The registry will request basic contact and diagnosis information. We will keep this information and use it to contact you in the future if you are eligible for one of our research studies. If you are eligible, we may reach out to you regarding participation.

The information you share will be stored at TGen indefinitely. The researchers may contact you in the future regarding studies that you may be eligible for. You do not need to take part in any research study.

We will take many precautions to protect your family’s privacy. The personally identifying information (such as name) that you share with us will be stored in a secure location with limited study personnel access.

There is no cost to participate in this registry and you and your family will not be paid for sharing your information. There is no direct benefit if you agree to participate. Your alternative is to not participate.

For questions, concerns, or complaints about the study, or about a research-related problem, please contact the study coordinator at 602-343-8653. This research is being overseen by an Institutional Review Board (IRB). An IRB is a group of people who perform independent review of research studies. You may talk to them at (855) 818-2289, researchquestions@wcgirb.com if you have questions, concerns or complaints about the study or about research subjects’ rights, that are not being answered by the research team.

The study staff may share the records generated from this research with the sponsor, regulatory agencies such as the US Food and Drug Administration, Health and Human Services, and the IRB. This information is shared so the research can be conducted and properly monitored. The people receiving this information may not be required to protect it and your/your family member’s information may be re-disclosed without your permission. If you do not provide permission to use your/your family member’s information, they cannot be in the study.

Your decision to participate or include your child/loved one in this study is voluntary. You will not be penalized or lose benefits to which you are otherwise entitled if you decide not to participate or if you decide to stop participating. If you decide you would like us to remove your information from our registry, please contact a study coordinator at 602-343-8653.

Your completion of this form will serve as your consent to participate in this study registry. If you do not want to participate, please do not submit the information on this form.

Your Contact Information
Note: If you are completing this form on behalf of someone else, please enter your personal contact information here. You will be able to provide their contact information in another section.
Your first name *
Your last name *
Your email address *
Your phone number *
Your year of birth (must be 18 or older) *
Do you have a personal history of MSA? *
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