We invite you to participate in a research study being conducted by investigators from The University of Iowa.  The purpose of the study is to better understand urinary and gastrointestinal symptoms in patients with spinal muscular atrophy (SMA). We are excited about this study, as to date, there is very limited data on this subject.

Individuals eligible to complete the survey include: 

-People with SMA 

-People not diagnosed with SMA who live in the same household as someone with SMA 

-All participants must be at least 4 years of age 

We are inviting you to be in this study if you or someone in your household has a diagnosis of SMA. You are receiving this survey because The Muscular Dystrophy Association and Cure SMA have both agreed to help distribute the questionnaire to people with SMA and their family members via email and posting it to their website, respectively. Approximately 7,000-10,000 people will receive and be eligible to take part in this survey. We ask that per household, a maximum of two people with SMA and two people without SMA fill out this survey. All participants must be over the age of four.

The survey will take approximately 10-20 minutes to complete. It is available to fill out 4 weeks after being emailed to the MDA listserv and posted on the CureSMA website. The survey will include questions asking about bowel and bladder symptoms, and management of those symptoms. Clicking "submit" on the final page of the survey indicates that you consent to participate. For participants under the age of 18, completing the survey indicates parental consent. You are free to skip any question you prefer not to answer, except the two questions marked in red as *required. Taking part in this research study is completely voluntary. If you do not wish to participate in this study, simply do not click submit, exit out of the webpage, and your responses will not be recorded for the study.

We will keep the information you provide confidential, however federal regulatory agencies and the University of Iowa Institutional Review Board (a committee that reviews and approves research studies) may inspect and copy records pertaining to this research. 

The survey is completely anonymous, we will not collect your name or any identifying information about you. It will not be possible to link you to your responses on the survey. The data collected will not be used for further studies. If we write a report about this study we will do so in such a way that you cannot be identified.

There are no known risks from being in this study, and you will not benefit personally.  However, we hope that others may benefit in the future from what we learn as a result of this study.

You will not have any costs for being in this research study. You will not be paid for being in this research study.

If you have any questions about the research study itself, please contact Maddie Lorentzen at madeline-lorentzen@uiowa.edu or 515-314-9862.  If you experience a research-related injury, please contact: Maddie Lorentzen at madeline-lorentzen@uiowa.edu or 515-314-9862. If you have questions about the rights of research subjects, please contact the Human Subjects Office, 105 Hardin Library for the Health Sciences, 600 Newton Rd, The University of Iowa, Iowa City, IA  52242-1098, (319) 335-6564, or e-mail irb@uiowa.edu. To offer input about your experiences as a research subject or to speak to someone other than the research staff, call the Human Subjects Office at the number above.

 

If you agree to participate, please complete the survey below. Please note you can skip any question, unless it is labeled *must provide value

Thank you very much for your consideration of this research study.

Sincerely,

Maddie Lorentzen

Wellstone Research Fellow

University of Iowa Carver College of Medicine

M.D. Candidate, Class of 2024

 

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