What Matters Most: Brain Health

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)

INTRODUCTION
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.

WHO IS CONDUCTING THIS RESEARCH?
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.

HOW WILL MY INFORMATION BE KEPT CONFIDENTIAL?
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.