You are being asked to participate in the Cure SMA Community Update Survey. The survey is about your experiences from living with SMA. These experiences can be shared from those personally affected, those currently caring for an individual with SMA, or those who cared for an individual with SMA (including those who cared for an individual who has since passed away). The survey results will be used to help clinicians, researchers, and our biotech and pharmaceutical partners accelerate the development of drugs and improve care for SMA. We estimate that it will take you less than 30 minutes to answer all of the survey questions.Completion of this survey is entirely voluntary. You will not be penalized or lose benefits if you decide not to participate or if you decide to stop participating. There are no right or wrong answers, so please choose the survey responses that best describe the affected individual’s situation. This survey is designed to be completed by adults with SMA, and parents or caregivers of adults and children with SMA. We encourage you to answer all the questions so that we can best understand your experiences, however, you are free to skip any questions you do not wish or can’t answer.All personal information and individual responses will be kept confidential. Your de-identified information will be shared with Cure SMA grant recipients, content providers, sponsors, service providers or other third parties to advance the goals of research, education, dissemination of information and otherwise in fulfillment of the goals of Cure SMA. Cure SMA uses Personal Information to assist in recruiting individuals into clinical studies and trials, providing aggregate disease statistics to third parties, providing de-identified individual patient disease information to third parties, contributing data to third party journal publications (your identity will not be published), and to refer patients to specialized SMA clinical centers. Such third parties are obligated to maintain the confidentiality of Personal Information and are not authorized to use such information for any purpose other than its intended purpose. Unless we have your consent or as required by law, Cure SMA will not share your Personal Information with any person or entity other than those affiliated with Cure SMA, entities acting on behalf of Cure SMA and relevant third parties such as Cure SMA research grant recipients or as may be required by law. By submitting Personal Information through the Sites or to a Cure SMA contact, you authorize Cure SMA to share this Personal Information for the purposes identified above.In addition, your information will be shared with 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 information may be redisclosed without your permission as allowed by law. If you do not provide permission to use your information you cannot be in the study. Your decision to be in this study is voluntary. There are no known risks associated with being in this research.You may not receive a direct benefit if you agree to participate. However, people in the future may benefit from the information obtained from this research.Your participation in this study is only to answer the questions on the survey. Your alternative is to not participate in this study.Contact Lisa Belter at 847-709-6344 for questions, concerns or complaints about the research or if you think you have been harmed as a result of joining this research.If you have any questions, concerns or complaints about the research or if you think you have been harmed as a result of joining this research, please feel free to contact communityupdatesurvey@curesma.org.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 (800) 562-4789, help@wirb.com if:
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- You have questions, concerns, or complaints that are not being answered by the research team.
- You are not getting answers from the research team.
- You cannot reach the research team.
- You want to talk to someone else about the research.
- You have questions about your rights as a research subject.
Please print this page and any of your answers for your records.
As a “thank you” for your time completing this survey, all participants will be entered into a drawing for the chance to receive one of 60 gifts from Cure SMA, including: attendance to a Cure SMA sponsored event, a tablet computer, $100 or $500 e-Gift card, or a tecla-e™!
Thank you again for your participation.