Please review the consent form and click "I Agree" below to take the brain health survey.


Protocol: A-LIST What Matters Most Insights Survey Series (The A-LIST WMM Insights Series)
Protocol Number: A-LIST 1
Study Classification: Series of questionnaires and other patient and caregiver research
Indication Studied: Alzheimer’s and other dementias, mild cognitive impairment, and general brain health
Study Author: Theresa Frangiosa, MBA
Sponsor: UsAgainstAlzheimer’s (UsA2)

You are being asked to participate in a research study because you have insights on what matters to individuals who care about brain health, are worried about their cognition, who perceive themselves to be at risk for Alzheimer’s disease, who may be at risk for underlying disease pathology, who self-identify as having a diagnosis of mild cognitive impairment, or who self-identify as current or former caregivers of patients with Alzheimer’s disease or other dementia or mild cognitive impairments.
This is a consent form. It gives you information about this study. This study is not a single event. Rather, it is a study that will be composed of a series of surveys and other research projects conducted over months and years ahead as described more fully below (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. The Study staff are available to talk with you about this information. You are free to ask questions about the Study at any time. If you agree to take part in the Study, you will be asked to verify that you accept the terms outlined in this consent form.
Before you learn about the Study, it is important that you know the following:

* Your participation is entirely your choice.
* You may or may not benefit from taking part in the Study, but knowledge gained from your participation may help others.
It is important that you read and understand the information about the Study before you take part. 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.

The Study is sponsored by UsAgainstAlzheimer’s (“Sponsor”) and is conducted as part of Sponsor’s Alzheimer’s Patient and Caregiver Engagement (AD PACE) initiative. AD PACE receives funding through a range of sources. These include funds from the government, foundations, industry, and private donors, such as Sponsor, The LEAD Coalition (Leaders Engaged on Alzheimer’s Disease), Biogen, Boehringer Ingelheim, Eli Lilly and Company, Home Instead, Lundbeck Pharmaceuticals, Otsuka Pharmaceuticals.
The main purpose of the Study is to develop an understanding over time and through multiple surveys of what matters most to individuals concerned with and/or affected by Alzheimer’s disease, and what such individuals hope for as outcomes delivered through new therapies, new tools and resources (including through new technologies), care and services, and changes in policies relevant to Alzheimer’s. Sponsor will use the answers to inform drug developers, regulators, payers, care and services providers, policy makers and others dedicated to supporting those with Alzheimer’s on what matters most to individuals across the lived experience with Alzheimer’s disease.

We will conduct research projects and online surveys through Survey Monkey software. You will receive an email describing each research project, the topic the project addresses, and any requirements for completing the project that are specific to the project itself. Sponsor anticipates offering you a new research opportunity as often as each month as part of the Study. You will have a choice whether to participate in each research project and will be able to decline participation by not responding to the email and beginning the survey. There is no obligation to compete any project you will be offered. Examples of surveys Sponsor has conducted include surveys on patient and caregiver burden due to cognitive disorders, treatment needs, use of, and attitudes toward technology, and barriers to clinical trial participation. We expect the surveys/projects to take up to ten (10) minutes to complete, though some may take longer. We will let you know about research projects that will require additional time, such as longer surveys, projects that ask you to provide entries into a diary over time, or opportunities that request a phone or in person interview. Again, participation in such diverse research opportunities is always entirely your choice.
An integrated clinical and statistical report will be generated that describes and summarizes the performance and results of each survey within the Study, and you will receive frequent summary reports on these project results.
We will take measures to protect the security of all your personal information, but we can never fully guarantee the confidentiality of all the Study information. Measures we will take include:
* The A-LIST surveys will be collected through Survey Monkey. Survey Monkey utilizes SSL encryption, which will be turned on to encrypt the survey and survey results.
* Upon closure of the survey, your data will be transferred onto secured and encrypted servers managed by the Healios Inc, our IT service provider, and deleted from the SurveyMonkey platform.
* We will maintain confidentiality standards by coding each participant enrolled in each survey or research project findings through the assignment of a unique identification number.
* Survey-related records identifying you will be kept confidential and, to the extent permitted by applicable laws and/or regulations will not be made publicly available except to the individuals and entities listed in the paragraph below.
* Third party marketing research firms may receive de-identified data with a unique identifier for analytical purposes; they are subject to the same laws and/or regulations regarding confidentiality.
* Should any of the results be published, the participant’s identity will remain confidential.
* Sometimes we may ask you if you want to participate in surveys conducted by another marketing research firm.  Again, while your confidentiality can never be guaranteed, A-LIST will assure that any such firm has in place protections for your personal information and privacy that are as rigorous as those we provide.
Sponsor, together with entities charged with the responsibility to monitor this research, may be permitted access to and inspect the research records. This may include access to your private information. Together with Sponsor, such entities include an institutional review board (“IRB”) and federal oversight authorities, such as the Office for Human Research Protections (“OHRP”). Otherwise, any information provided by Sponsor to individuals or entities will remain de-identified. 
The Study is for research purposes only. You may not receive any direct benefits from your participation in the Study. However, information learned from the Study may help other people in the future by allowing us to gain insight into a range of issues relevant to clinical trial design, regulatory submissions, marketing strategies, payer value determinations and care and services research involving those with Alzheimer’s disease or other dementia or mild cognitive impairments.

Some of the survey questions may make you feel uncomfortable or raise unpleasant memories. You are free to skip any question.
Data obtained through the Study will be de-identified and presented through summary findings that will be shared with you and publicly by Sponsor. In addition, data obtained from the Study may be presented at academic conferences, or may be published in medical journals. However, in this case, your name, address, or any other identifiable information will not be transmitted to these outside parties.
Further, we may need to share data with an IRB and federal oversight agencies, such as OHRP. Should any data be shared that contains your health information we will do so on the condition that your confidentiality be fully protected and secured. However, there is a chance your information could be breached and further disclosed if these entities do not adhere to confidentially provisions they promised. By signing this form, you acknowledge the possibility that these acts might occur. Please be assured that we will give you full consideration for protecting your personal information and will comply with all applicable laws and regulations. However, we can never fully guarantee the confidentiality of all your personal information.

We have no plans to routinely offer you financial compensation for surveys fielded by the A-LIST or share the profits from the commercialization of any products, processes, or services developed from your information. However, you will not lose any legal rights to which you are entitled by agreeing to participate in this research. Also, there is no cost to you for taking part in this study. There may be times when longer surveys or other research opportunities that we tell you about warrant compensation – the situations will be specifically identified in the email or offer that you receive introducing the project.

Choosing Not to Participate
You are free to choose to not take part in the Study. Your participation in the Study is voluntary, and deciding not to take part will involve no penalty or loss of benefits to which you are otherwise entitled. You do not have to accept the terms in this form; however, if you do not accept them, you cannot take part in the Study.
Withdrawing from the Study
You may discontinue participation in the Study at any time, and there will be no 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
If you choose to withdraw, data collected up until your withdrawal may still be used in the Study. 

Your information collected in the Study will not be used or distributed for research studies even if the identifiers are removed.

During the study, if you have questions, concerns or complaints about the study, please contact the Investigator at the telephone number listed on the first page of this consent document. If you seek emergency care, or hospitalization is required, alert the treating physician that you are participating in this research study.
An institutional review board (IRB) is an independent committee established to help protect the rights of research subjects. 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:
Please reference the following number when contacting the Study Subject Adviser: Pro00029894.

Question Title

* 1. 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 a Study survey 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 do not give up any of my legal rights. Please print a copy of this form for your records.
  • If you are 18 years of age or older, understand the statements above, and consent to participate in the Study, click on the "I Agree" button to begin the survey.
  • If you do not wish to participate in the Study, please click the “I Do Not Agree” button to exit the Study.