# Project 2

> **NIH NIH P20** · CLEVELAND CLINIC FOUNDATION · 2022 · $150,442

## Abstract

SUMMARY/ABSTRACT 
 PROJECT R-2 
Ethnoracial Characterization of Patient-Centered Outcomes (Dr. John) 
Both African American and Hispanic older adults are at greater risk for the development of Alzheimer’s disease 
and other neurodegenerative disorders (NDD). Improving the identification and measurement of NDD within 
ethnoracially diverse patients is therefore a public health priority. Neurodegenerative disorders manifest 
differently across diverse, multicultural groups as a result of disease comorbidities, lifestyle factors, and 
exposures to discrimination and developmental disadvantages. However, accurate measurement of disease is 
a necessary precursor for investigating treatment efficacy. Use of patient-centered outcomes can increase the 
likelihood of minority patient engagement and retention in research. Patient-centered outcomes also increase 
treatment adherence and improve quality of life. Research in NDD has been slow to embrace and prioritize 
patient-reported outcome measures. Instead, studies of NDD rely on clinical outcome measures of cognition, 
behavioral symptoms, and independent functioning, which may be reported only by a caregiver and interpreted 
by a healthcare provider. Patient and caregiver perceptions of current NDD outcome measures are not well 
researched, and this is particularly true for ethnoracial minorities. Even among common clinical outcome 
measures, minimal research exists examining the validity and efficacy within ethnoracial minority samples. The 
proposed project will utilize an exploratory sequential mixed-methods design to evaluate common clinical trial 
outcome measures and patient-centered outcomes in NDD within Hispanic and African American participants. 
We will first evaluate the measurement properties of existing clinical trial outcome measures to ensure that they 
do not disadvantage ethnoracial minorities. This will allow us to assess the comparability of existing measures 
across diverse groups. We will then conduct focus groups with ethnoracially diverse patients and community 
older adults to identify culturally sensitive healthcare concerns and prioritized patient-centered outcomes. Finally, 
we will evaluate these perceptions and preferences in greater detail through a survey administered to a larger 
sample of racially diverse community participants and current CNTN patients to evaluate the presence of any 
group differences that may exist by ethnoracial identity. The findings from these analyses may have profound 
impact in clinical trials and outcome measurements among older adults with NDD. The study goals outlined 
above will generate pilot data for future research and will help support the project leader in her application for 
independent research funding.

## Key facts

- **NIH application ID:** 10482404
- **Project number:** 5P20GM109025-07
- **Recipient organization:** CLEVELAND CLINIC FOUNDATION
- **Principal Investigator:** Samantha E. John
- **Activity code:** P20 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $150,442
- **Award type:** 5
- **Project period:** 2015-09-01 → 2026-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10482404

## Citation

> US National Institutes of Health, RePORTER application 10482404, Project 2 (5P20GM109025-07). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10482404. Licensed CC0.

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