Clinical trial NCT04466722: The A-LIST WMM Insights Series
Official title: A-LIST What Matters Most Insights Series
Study type: OBSERVATIONAL
Overall status: UNKNOWN
Conditions: Alzheimer Disease
Dementia
Mild Cognitive Impairment
Keywords: Alzheimer
Dementia
Cognitive
Cognition
Brain health
Lead sponsor: UsAgainstAlzheimer's
Sponsor class: OTHER
First posted: 2020-07-10
Enrollment: 10000
Sex: ALL
Minimum age (years): 18
Maximum age (years): 100
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: COHORT
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: 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 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.

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.

Eligibility criteria: 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.

Primary outcomes:
measure: Phenotypical Characteristics of Patients and Caregivers
timeFrame: 3 years
Secondary outcomes:
Other outcomes:
Locations:
city: Washington
country: United States
facility: UsAgainstAlzheimer's
state: District of Columbia
Study officials:
affiliation: UsAgainstAlzheimer's
name: Theresa Frangiosa, MBA
role: PRINCIPAL_INVESTIGATOR
References: