N/A
N=182
A Relational Research Recruitment and Engagement Intervention for Cognitive Aging Research
Dementia · Cognitive Dysfunction · Alzheimer Disease · Lewy Body Disease · Frontotemporal Dementia
Bottom Line
View on ClinicalTrials.gov: NCT05444244 ↗Enrolled (actual)
182
Serious AEs
0.0%
Results posted
Feb 2024
Primary outcome: Primary: Number of Participants Enrolled in Each Recruitment Arm — 182 Participants
Study Design & Population
- Study type
- Interventional
- Phase
- N/A
- Interventions
- Relational Research Recruitment and Engagement Intervention (Other)
- Age
- Adult, Older Adult · 18+ yrs
- Sex
- All
- Sponsor
- University of Wisconsin, Madison
- Primary completion
- May 2023
Outcome Measures
| Outcome | Result | p-value |
|---|---|---|
| PRIMARY Number of Participants Enrolled in Each Recruitment Arm |
182 | — |
| SECONDARY Number of Participants Retained Over Time |
182 | — |
Summary
Despite well-documented disparities in Alzheimer's disease and related dementia (AD) prevalence, incidence, treatment, and mortality, individuals from disadvantaged backgrounds (e.g. racial/ethnic minorities and socioeconomically disadvantaged persons) are under-represented in clinical research. Existing research recruitment approaches are rarely designed to accommodate the priorities, concerns, and constraints relevant to participants from diverse backgrounds. To address these gaps, the investigators developed a research recruitment and engagement model, the Participant Oriented Research Engagement Model that centers and prioritizes relational aspects of research engagement, research participant needs, and systematically address socioeconomic determinants (i.e. unmet needs) that may limit accessibility of research. The investigators propose to test the effectiveness of the Brain Health Community (BHC) Registry recruitment and engagement intervention, as compared to standard research recruitment strategies in modifying enrollment rates, participant satisfaction, and engagement. The investigators hypothesize that the BHC Registry will yield greater enrollment rates, higher satisfaction, and better ratings of relational engagement.
Eligibility Criteria
Inclusion Criteria for Participants Ages 40 or Older:
- English-speaking
- Interested in learning about research opportunities related to aging, brain health, and caregiving
- If evidence of a lack of decision-making capacity is present, presence and consent from a legally authorized representative (LAR) in addition to assent from the participant with cognitive challenges
Inclusion Criteria for Caregiver Participants Ages 18 or Older:
- English-speaking
- Has had previous or current contact (phone, in-person, coordination of services, etc.) with a person with Alzheimer's disease or related dementia at least monthly and provides unpaid support to the individual which can be health, financial, social, or logistical in nature
- Interested in learning about research opportunities related to aging and brain health, particularly related to care for people living with Alzheimer's disease or related dementia
Exclusion Criteria for Participants Ages 40 or Older:
- Is not interested in learning about research opportunities related to aging and brain health
- Under 40 years of age and/or no ADRD caregiving experience
- Evidence of a lack of decision-making capacity and LAR cannot be found or contacted
- Populations who are completely blind or completely deaf
Exclusion Criteria for Caregiver Participants Ages 18 or Older:
- Frequency of contact with the person with ADRD is or has been less than monthly
- Nature of contact does not involve providing supports for person with ADRD, or caregiver is paid for supports
- Under 18 years of age
- Populations who are completely blind or completely deaf
Data sourced from ClinicalTrials.gov (NCT05444244). Outcome figures and adverse-event rates are extracted automatically from the registry's posted results and are provided for clinician reference, not as a substitute for the primary publication.