TITLE: Cure SMA 2024 Community Update Survey
PROTOCOL NO.: None
WCG IRB Protocol #20173058
SPONSOR: Cure SMA
INVESTIGATOR: Mary Schroth, MD
925 Busse Rd
Elk Grove Village, Illinois 60007
United States
STUDY-RELATED
CONTACT(S): Mary Schroth, MD
mary@curesma.org
Lisa Belter
847-709-6344
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.
What personally identifiable information may be used and given to others?
The health information that may be used or given to others includes medical information and other information about your experiences from living with SMA.
Personally identifiable information may be used by or disclosed to Cure SMA employees who collect and review the information provided. Cure SMA uses personally identifiable information to assist in recruiting individuals into clinical studies and trials, and to refer patients to specialized SMA clinical centers.
Personally identifiable information may be disclosed to or used by the study sponsor, the Institutional Review Board (IRB) that reviews research, and other federal or state agencies. In these instances, the minimum necessary personally identifiable information will be disclosed by Cure SMA.
What other information about your experiences from living with SMA may be used and given to others?
Before using or disclosing your experiences from living with SMA to clinicians, researchers, and our biotech and pharmaceutical partners, all personally identifiable information will be removed.
We or others we disclose information to may publish the results of this research. However, your personally identifiable information will be kept confidential, and will never be published.
Is the information I share about my experiences with SMA protected?
Cure SMA protects personally identifiable information and health information as required by state and federal law. Personally identifiable information will not be disclosed except as permitted or required by law.
Those persons who receive deidentified information may not be required by Federal or state privacy laws to protect it and may share that information with others without your permission, if permitted by laws governing them.
What if I decide not to give permission to use and disclose the information shared?
You do not have to sign this document, but if you do not, your information will not be used in any research related to the Cure SMA Community Update Survey. If you do not sign this document, you will not be penalized or lose benefits.
May I withdraw or revoke (cancel) my permission?
You may change your mind and withdraw or take back your permission at any time. When you withdraw your permission, no new information about your experience with SMA will be gathered after that date. Information that has already been gathered may still be used and given to others. To withdraw your permission, you must write to:
Mary Schroth
Cure SMA
925 Busse Rd
Elk Grove Village, Illinois 60007
Does my permission have an expiration date?
Your permission does not have an expiration date.
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 WCG IRB. An IRB is a group of people who perform independent review of research studies. You may talk to them at 855-818-2289 or researchquestions@wcgirb.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 emailed a $25 e-gift card within 4-6 weeks of completion.
Thank you again for your participation.