- Why is this survey being conducted?
The purpose of this survey is to gather information from individuals with Sanfilippo syndrome so that BioNews Services and its partners can bring better understanding, advocacy, and provide our readers more relevant editorial content to the larger Sanfilippo syndrome community.
- What will I do?
If you agree to participate in this survey, you will have the opportunity to complete an online survey. The survey may include questions about your diagnosis, medical history, life expectancy, and other background information. This survey should only take you a few minutes to complete.
After you complete the survey, we may contact you with follow-up questions based on your answers and your willingness to provide your contact information. 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 participate?
No. Although you will complete the first part of the survey, depending on the information you provide you may not be eligible to complete the remainder of the survey.
- Who will have access to my personal information?
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 Services and/or a third party company. Please review BioNews Services’ privacy statement, which identifies who may have access to your personal information if you consent to participate in the survey. BioNews Services employees and personnel who analyze survey results will have access to your medical and other personal information you provide in response to survey questions, as well as your name and contact information in the event you provide it.
Once collected by BioNews Services, your medical information and other personal information provided in the survey may be shared with third parties, such as pharmaceutical companies, medical device companies, and government agencies. However, in the event BioNews Services shares such information with third parties, your individual health information will only be shared with third parties upon your express consent to share such information with third parties. Should the generic medical information you provide in response to survey questions be published, it would not be associated with your name or likeness.
BioNews Services may use your name and contact information (limited to e-mail or phone number and city/state) to communicate with you regarding the survey or other BioNews Services offerings and opportunities.
- Will any of my personal information be used for research?
Possibly. If you are eligible to complete the entire survey, BioNews Services may share certain of your medical information and data with external research partners outside of BioNews Services. It is possible, even likely, that BioNews Services will share your survey answers and personal information with third parties for the purposes of conducting clinical trials and research. These third parties may include pharmaceutical companies, device manufacturers, and government agencies.
However, BioNews Services will not share any of your personal individualized information of any kind with any third party unless you specifically consent to BioNews Services providing that personal information to third parties for clinical trial recruiting purposes.
- 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 Sanfilippo syndrome, including potential treatments and cures. BioNews Services 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 Services’ research findings.
- Are there any risks to me from participating in this survey?
Even though BioNews Services 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 personal 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.
- 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:
STATEMENT OF CONSENT
I have read this form 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 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.
SPECIFIC INFORMATION FOR SECOND CONSENT FOR THIRD PARTIES
CONSENT TO USE AND DISCLOSE INFORMATION TO THIRD PARTIES FOR RESEARCH PURPOSES
If you agree by clicking “Next” on the survey welcome page, the results of this survey as well as your personal information provided will be shared with third parties for the purposes of research, including clinical trials, which may include pharmaceutical companies, medical device companies, and government agencies. By clicking “Next” on the survey welcome page, you are giving your permission for BioNews Services for (a) BioNews Services, and (b) any third parties with which BioNews Services shares your information, including persons or companies working for BioNews Services or with those third parties, to use and share your survey answers and personal information as described below:
- These are the types of information that may be used and shared for research purposes:
- Your name, e-mail address, phone number, city, and state;
- All information provided in response to survey questions.
- BioNews Service and third parties to which your information is provided may:
- Receive, use and share your information to conduct research trials and as required by law;
- Share your information with representatives of government agencies, review boards and others who watch over the safety and effectiveness of medical products and/or the conduct of research;
- Use and share your information for internal reference, for comparison with other data, to help design subsequent trials, and in papers submitted to United States and foreign regulatory agencies regarding later-developed products.
- 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, you will not be able to have your information used in this trial;
- 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.