- Why is this survey being conducted?
The purpose of this survey is to gather information from individuals with spinal muscular atrophy or their legal representatives. The information you share will help us understand your medical condition a bit better so that we can reach out to you if we identify a clinical trial opportunity that seems right for you.
- What will I do?
If you agree to participate, you will have the opportunity to complete an online survey. This brief survey includes questions about your diagnosis, medical history, and other background information. It should only take you a few minutes to complete the survey.
After you complete the survey, we may contact you with follow-up questions based on your answers. We may also request that you participate in additional surveys, which, like this survey, will also be completely voluntary.
- 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.
- If I decide to participate in this survey, am I guaranteed to be matched to an ongoing clinical trial?
No. Although you will complete this survey, depending on the information you provide we might not be able to identify an ongoing clinical trial that seems right for you.
- Who will have access to my personal information?
- Are there any benefits to me from participating in this survey?
By completing this survey, we might learn that you might potentially qualify to participate in one or more ongoing clinical trials for SMA. Although further conversations will be needed to establish your eligibility, this survey represents the first step towards possible participation.
- Are there any risks to me from participating in this survey?
BioNews Services makes every effort to safeguard all information collected from its surveys with highly sophisticated encrypted HIPAA-compliant devices and services; however, there are small but potential risks to you from participating in this survey. They may include the possibility that someone without authorization may access your survey or personal information. In order to protect your privacy, the analyzed results of surveys conducted by BioNews Services will be summarized and anonymized not to include your personal information; however, a slight possibility exists, 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.
You may find some of the questions to be sensitive or distressing to you based on your condition or experiences.
- 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 send an e-mail to the following address: [email protected].
STATEMENT OF CONSENT
I have read this form in its entirety. 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 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 survey, I can close my internet browser.
CONSENT TO USE AND DISCLOSE INFORMATION TO THIRD PARTIES FOR RESEARCH PURPOSES
Please note that:
- Neither your name nor your identity will be disclosed in any article that may be published about a clinical trial or otherwise;
- Once all personal information has been removed from your trial records, the remaining information in the trial records may be used and shared freely;
- You do not have to sign this consent form, but if you do not, we will not be able to identify clinical trials that are a potentially good match for you;
- You may change your mind and withdraw this Authorization at any time by writing to: [email protected];
If you withdraw this Authorization, your information that has already been shared may continue to be used and shared to maintain the integrity of the research;
This Authorization does not have an expiration date as it relates to future submissions to regulatory agencies.