# Maximizing Components of Trustworthiness in the Decision to Participate Preclinical Alzheimer's Disease Research Involving Lumbar Puncture

> **NIH NIH P30** · UNIVERSITY OF WISCONSIN-MADISON · 2020 · $154,974

## Abstract

PROJECT SUMMARY
Although African Americans (AA) experience the highest rates of Alzheimer’s Disease (AD), they are
paradoxically and dramatically underrepresented in AD trials.1–5 Preclinical AD biomarker research, important
to the development of AD prevention, presents additional challenges to inclusion. Such studies must retain
non-symptomatic participants over time and involve invasive biomarker data collection methods such as
lumbar puncture (LP).6–8 Disclosure of participant risk of AD is another potential barrier and little is known
about the socio-cultural meaning of disclosure in non-white communities.9
Building upon the success of preliminary research and the resources of the Wisconsin Alzheimer’s Research
Center (WADRC), Collaborative Center for Health Equity (CCHE), and the Wisconsin Alzheimer’s Institute
(WAI), we propose a feasibility test of an innovative mixed methods approach to assess willingness to
participate in preclinical AD research that accounts for: (1) the relative weight and interaction of multiple
factors that influence the decision to participate in research; and the (2) estimation of risk (connected to trust)
in the absence of interpersonal trust. The mixed methods story deck (SD) is a simple, gamified card sort
adaptation of a factorial survey designed to explore choice as well as the discernment of complex concepts
such as trust, risk, and benefit from culturally defined heuristics, or mental shortcuts used in decision making.
27–30 The method has been used recently to explore the components of trustworthiness in the decision to
participate in genomics research31,32 but has yet to be applied to more invasive data collection procedures such
as LP or complex issues such as the disclosure of AD risk.
Project aims are to: (1) quantitatively determine patterns of decision making relative to LP research
participation among AA (n=85) (aged 40+) living in Dane County, WI; and (2) qualitatively explore the relative
importance and meaning of factors in the decision to participate in LP research among African Americans
through this mixed method approach. Analysis will include general linear models and modern classification and
regression tree (CART) methodology as well as a modified grounded theory approach to qualitative analyses.
If successful with more invasive data collection, this method could be applied to larger, representative samples
of participants to provide an accurate and actionable understanding of the dynamics of research engagement
involving a wide range of studies. Moreover, this simple method could be used to gauge participant preference
and priorities tied to specific communities regarding any combination of attributes of a recruitment plan
including other forms of data collection, approaches or use of incentives thus provide timely information about
community needs, desires and perceptions before recruitment plans are finalized or implemented.

## Key facts

- **NIH application ID:** 10131502
- **Project number:** 3P30AG062715-02S1
- **Recipient organization:** UNIVERSITY OF WISCONSIN-MADISON
- **Principal Investigator:** Sanjay Asthana
- **Activity code:** P30 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $154,974
- **Award type:** 3
- **Project period:** 2019-05-01 → 2021-03-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10131502

## Citation

> US National Institutes of Health, RePORTER application 10131502, Maximizing Components of Trustworthiness in the Decision to Participate Preclinical Alzheimer's Disease Research Involving Lumbar Puncture (3P30AG062715-02S1). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/10131502. Licensed CC0.

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