Alzheimer Disease, Dementia, Mild Cognitive Impairment
Conditions
Keywords
Alzheimer, Dementia, Cognitive, Cognition, Brain health
Brief summary
The main purpose of the Study is to develop an understanding over time and through multiple research projects, including surveys, interviews, online focus groups, and other primary research methodologies (A-LIST Research Projects) on what matters most to individuals concerned about brain health and those with and/or affected by Alzheimer's disease and other dementias, including caregivers.
Detailed description
To do this, UsAgainstAlzheimer's will identify and engage individuals who want to focus on brain health; individuals who are worried about their cognition; individuals who perceive themselves to be at risk for Alzheimer's disease (AD); individuals who may be at risk for AD due to self-identified confirmation of underlying disease pathology; individuals who self-identify as having a diagnosis of mild cognitive impairment (MCI) or of AD or another dementia; and those who self-identify as current or former caregivers of patients with Alzheimer's disease or another dementia to participate in the A-LIST Research Projects. Such participants will either already be - or will be invited to become - members of the A-LIST cohort, an online cohort of individuals ready and willing to engage in A-LIST WMM Insights Series (A-LIST members). The A-LIST WMM Insights Series will enlist participants to offer insights into a range of issues relevant to Alzheimer's, including as examples issues pertinent to clinical trial design, regulatory submissions, other research strategies, payer value determinations, and care and services research. The A-LIST WMM Insights Series may seek information that in some instances will be marketing research or other research exempt from IRB oversight. However, when an individual A-LIST Research Project constitutes human subjects research consistent with governing law, IRB approval will be sought and obtained. Where questions exist whether an individual A-LIST Research Project constitutes human subject research, IRB determination will be solicited.
Interventions
None listed
Sponsors
UsAgainstAlzheimer's
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to 100 Years
Healthy volunteers
Yes
Inclusion criteria
To be eligible to participate in the Study, an individual must meet all of the following criteria: 1. Age 18 years or older. 2. United States, Canada resident. 3. Self-report of cognitive difficulties, caregiver status or interest in brain health. 4. Have indicated willingness to participate by selecting I Agree option when joining the A-LIST. Additionally, will have clicked on link - invitation to take a specific survey 5. Able to speak, read, and understand English.
Exclusion criteria
An individual who meets any of the following criteria will be excluded from participation in this Study: 1\. Unable to comply with the Study requirements.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Phenotypical Characteristics of Patients and Caregivers | 3 years | Online monthly surveys capture the burden and unmet needs for patients and caregivers of individuals with or at risk for Alzheimer's disease, other dementias, and mild cognitive impairment; also recruiting individuals interested in brain health. |
Countries
United States
Contacts
Primary ContactVirginia Biggar, BA
Backup ContactTheresa Frangiosa, MBA
Outcome results
None listed