1. Why is this survey being conducted?
The purpose of this survey is to gather information from individuals with spinal muscular atrophy so that BioNews and its partners can bring better understanding, advocacy, and provide our readers more relevant editorial content to the larger SMA community.
2. What will I do?
If you agree to participate in this survey, you will have the opportunity to complete an online survey. The survey includes questions about your diagnosis, medical history, life expectancy, and other background information. This survey should only take you a few minutes to complete.
3. Am I required to participate in this survey?
No. Your participation in this survey is completely optional. Whether or not you participate in this survey is completely up to you. Even if you start the survey, you may stop participating at any time up until you submit the survey.
4. Will any of my survey answers be used for research?
Your medical information and any other personal information you enter into the website during your participation in the survey may be reviewed, analyzed, and/or aggregated by BioNews.
5. Who will have access to my survey answers?
Please review BioNews’ privacy statement, which identifies who may have access to your survey answers if you consent to participate in the survey. BioNews employees and personnel who analyze survey results will have access to your survey answers, and thus your medical and other personal information
During this survey, BioNews will not collect, and therefore will not share, any of your personal individualized information of any kind with any third party.
6. Are there any benefits to me from participating in this survey?
We do not expect you to benefit personally from participating in this survey. Your participation may lead to new discoveries about SMA, including potential treatments and cures. BioNews strives to enhance public and professional understanding of rare diseases to improve the prognosis for those who have them. We hope that the knowledge we gain from your (and others’) participation in this survey will benefit others, including you, in the future. In addition, by participating in the survey you may learn more about BioNews’ research findings.
7. Are there any risks to me from participating in this survey?
Even though BioNews makes every effort to safeguard all information collected from its surveys with highly sophisticated encrypted HIPAA-compliant devices and services, there are potential risks to you from participating in this survey. They may include the possibility that someone without authorization may steal or access your survey or medical information. Such a data breach could lead to the release of that information to the public. Furthermore, although the analyzed results of surveys conducted by BioNews Services will be summarized and will not include your personal information, the possibility exists, though highly unlikely, that a third party that has your medical information or data in its possession could compare the survey results to the information it has and determine your identity.
Some survey questions may make you or your family members uncomfortable. You may find some of the questions to be sensitive or distressing to you based on your condition or experiences.
There may also be risks to your participation in this survey that BioNews Services cannot currently foresee.
8. Who can answer my questions about this survey?
If you have questions or concerns about this survey, or have experienced a research-related problem or injury, please contact the following:
Statement of Consent
I have read this form. I have been given the chance to ask questions about this form and the survey and have my questions answered. If I have more questions, I have been informed of who to contact. By clicking the “Next” button on the survey welcome page, I agree to participate in this survey. I can print or save a copy of this consent information for future reference. If I do not want to participate in this study, I can close my internet browser.