Thank you for your interest in our survey. This survey is part of UsAgainstAlzheimer’s A-LIST "What Matters Most" online study. Your answers are anonymous and private. Please review the information below on the study and your rights as a participant. To take the survey, select "Yes, I agree" at the bottom of the page. Thank you.
CONSENT TO PARTICIPATE IN A RESEARCH STUDY
Thank you for joining UsAgainstAlzheimer’s A-LIST! If you wish to participate in this research, review this form and click “Yes, I Agree” at the bottom of the form.
- Protocol: A-LIST What Matters Most Insights Series (The A-LIST WMM Insights Series)
- Study Author: Theresa Frangiosa, MBA
- Sponsor: UsAgainstAlzheimer’s (UsA2)
You are being asked to participate in a research study, The A-LIST WMM Research Study (the “Study”).
Before you decide if you want to be a part of the Study, we want you to know the purpose of the Study, how it may help you, any risks and benefits to you, what other choices you may have, how we will protect your information, and what is expected of you.
An Institutional Review Board (IRB) is in place to make sure that your rights are protected. The institutional review board (IRB) at Advarra has reviewed this Study, including this communication with you that seeks your consent to be part of the Study.
If you have any questions about the Study and your rights, please contact UsAgainstAlzheimer’s at 888-818-8722 and leave a message. Your call will be returned within 24 business hours.
WHO IS CONDUCTING THIS RESEARCH?
The Study is sponsored by UsAgainstAlzheimer’s (“Sponsor”) an advocacy and research organization working to expand treatments and accelerate cures for Alzheimer’s disease. The Study receives funding through a range of sources, which include donations from individuals, from government, from charitable foundations, and from industry.
WHY IS THIS STUDY BEING DONE AND HOW WILL IT WORK?
The main purpose of the Study is to learn what matters most to people who are interested in general brain health or who are affected by or concerned about Alzheimer’s disease and other dementias. Research answers will be used to inform others, including drug developers, regulators, payers, care and services providers, and policymakers.
We will conduct research projects, primarily through online surveys. In the case of surveys and other types of research, you will receive an email describing each project and who can participate. We anticipate offering you a new research opportunity as often as each month as part of the Study, and these offers will be made over several years. Participation in each project is voluntary. We expect surveys to take up to ten (10) minutes to complete, though some projects may take longer.
You will receive frequent summary reports on these project results.
HOW WILL MY INFORMATION BE KEPT CONFIDENTIAL?
Any information that you provide as part of the Study is confidential. We will take every precaution to protect your privacy, but we cannot fully guarantee complete confidentiality of all the Study data. Measures we will take to protect your privacy include:
- The data you provide will be hosted on a secure server and encrypted.
- We will maintain confidentiality standards by assigning a code (unique identification number) to each participant enrolled in each survey or research project as well as the findings.
- When sharing findings, we will remove all identifying information and combine your responses with other research participants so that it will be very difficult to identify any single participant.
- Survey-related records identifying you will be kept confidential and will not be made publicly available unless legally required. We may share only de-identified (coded) data with third-party marketing research firms, subject to the same laws / and/or regulations regarding confidentiality.
- Sometimes we may ask you if you want to participate in research conducted by another marketing research firm. While you will have the opportunity to choose whether to engage in their research, we will work only with firms that we believe have equally secure privacy and data protections.
- Results of the Study may be used in presentations or published scientific reports but never with your identity disclosed.
- The IRB and federal oversight authorities, such as the Office for Human Research Protections (“OHRP”), may be permitted access to inspect the results. The authorities are bound by the highest ethical standards to protect your identity.
BENEFITS ASSOCIATED WITH THE SURVEY
Information learned from the Study is important because it will help improve our understanding of general brain health and how people living with Alzheimer’s and their caregivers are affected by this disease.
RISKS ASSOCIATED WITH THE STUDY
There are no physical risks from this Study. There are no tests, procedures, or doctor’s visits required for the Study. However, there is a chance that some of the survey questions may make you feel uncomfortable or raise unpleasant memories. You are free to skip any question.
There will be no charge to you for your participation in this study.
We have no plans to offer you financial compensation for routine surveys fielded by the A-LIST or share the profits from the commercialization of any products, processes, or services developed from your information. You may be offered compensation for longer research projects. In those cases, we will specifically identify the opportunity in the email that you receive introducing the project.
Any new important information that is discovered during the study, and which may influence your willingness to continue participation in the study, will be provided to you.
VOLUNTARY PARTICIPATION AND WITHDRAWAL
Choosing Not to Participate / Withdrawing from the Study
Your participation in the Study is voluntary. You are free to selectively participate in each research opportunity, as well.
You may discontinue participation in the Study at any time without penalty or loss of benefits to which you are otherwise entitled. If you no longer want to take part in the Study, please contact us at firstname.lastname@example.org.
If you choose to withdraw, data collected up until your withdrawal may still be used in the Study.
The Investigator or the sponsor can stop your participation at any time without your consent for the following reasons:
- If you fail to follow directions for participating in the study;
- If it is discovered that you do not meet the study requirements;
- If the study is canceled; or
- For administrative reasons.
If you have any questions about your rights as a research subject, and/or concerns or complaints regarding this research Study, contact:
- By mail:
- Study Subject Adviser
- Advarra IRB
- 6940 Columbia Gateway Drive, Suite 110
- Columbia, MD 21046
- or call toll free: 877-992-4724
- or by email: email@example.com
Please reference the following number when contacting the Study Subject Adviser: Pro00029894.
I have read this form (or someone has read it to me), and I have decided to participate in the Study described above. I have been able to ask questions about the Study. Its general purposes, the details of my participation, and the possible risks and inconveniences associated with my participation in the Study have been explained to my satisfaction and my questions have been answered. I understand that if I am asked to participate in Study research that involves information not included on this form, such as specific benefits and risk and information specifying how my personal data is used and disclosed, I will receive an amended informed consent form.
- By clicking the “I Agree” button below, I acknowledge that I am age 18 years or older and that I do not give up any of my legal rights. Please print a copy of this form for your records.
- If you do not wish to participate in the Study, please click the “I Do Not Agree” button to exit the Study.