Alzheimer's Disease and Precision Medicine Research Among Native People

NCT ID: NCT03448601

Last Updated: 2024-06-27

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

523 participants

Study Classification

INTERVENTIONAL

Study Start Date

2021-05-01

Study Completion Date

2024-04-30

Brief Summary

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This project intends to address the gaps in Alzheimer's disease (AD) and precision medicine (PM) research in American Indian and Alaska Native (AI/AN) populations by comparing written and video-based materials for recruitment into AD and PM research, and by creating an AD-PM registry of AI/AN individuals who are willing to be contacted for future research opportunities.

Detailed Description

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This project intends to address the gaps in Alzheimer's disease (AD) and precision medicine (PM) research in American Indian and Alaska Native (AI/AN) populations by comparing written and video-based materials for recruitment into AD and PM research, and by creating an AD-PM registry of AI/AN individuals who are willing to be contacted for future research opportunities. The project will be a 3-arm RCT with a sample size of 501 AI/AN adults, aged 40 years and older. The RCT enables us to compare outcomes between groups to determine the effect of a tailored brochure and video compared to non-tailored, text-based recruitment materials, and assemble a large registry of AI/ANs with biospecimens and data from medical records for future AD research.

The AI/AN population is growing as a proportion of the total US population, and gains in life expectancy mean that the number of Native elders at risk of AD is rapidly increasing. Therefore, there is a need for research in this understudied group.

The study procedures are expected to take participants approximately 2-3 hours to finish. Participants will be asked to complete a pre-intervention self-report questionnaire and have their height, weight, and neck circumference measured. Next, they will be randomized to one of the 3-treatment arms. Participants allocated to the control condition will receive the standard brochure on AD and PM, with standard text-based content not specifically tailored for AI/ANs. Participants randomized to the intervention will either view a short culturally tailored video (5 minutes) or read a culturally tailored educational brochure. All brochures and video will contain the same base information on AD and PM. Participants will have as much time as they need to review the material. After each participant has finished reading the relevant brochure or viewing the video, they will be asked to complete post-intervention data collection that includes: 1) an ADRD knowledge questionnaire and 2) enrollment in the AD-PM Registry. If the participant chooses not to enroll in the AD-PM Registry, their participation in the study is complete. If the participant agrees to enroll in the registry, they will be asked to complete 3) the AD-PM Module, 4) biospecimen donation (blood, saliva, and urine samples), and 5) permission to access medical records. Participants who complete the AD-PM module and provide biospecimens but decline consent to access medical records will still be added to the registry.

Conditions

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Alzheimer Disease

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Participants will be randomized in equal proportions either to receive 1) a standard, non-tailored educational brochure on Alzheimer's Disease (AD), the value of precision medicine (PM), and the importance of research (control); OR 2) to receive a culturally tailored brochure with graphics and identical information; OR 3) to view a digital story featuring personal narratives of AI/ANs (intervention).
Primary Study Purpose

HEALTH_SERVICES_RESEARCH

Blinding Strategy

NONE

Study Groups

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Non-tailored control group

Participates will read the standard Alzheimer's disease and Precision Medicine brochure with standard text-based content NOT specifically tailored for AI/ANs.

Group Type NO_INTERVENTION

No interventions assigned to this group

Culturally tailored video intervention group

Participants will view a short 5-minute culturally-tailored video.

Group Type EXPERIMENTAL

Culturally tailored video intervention group

Intervention Type OTHER

Culturally-tailored Alzheimer's Disease and precision medicine educational video.

Culturally tailored brochure intervention group

Participants will read a culturally-tailored educational brochure on Alzheimer's disease and Precision Medicine.

Group Type EXPERIMENTAL

Culturally tailored brochure intervention group

Intervention Type OTHER

Culturally-tailored Alzheimer's Disease and precision medicine educational brochure.

Interventions

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Culturally tailored brochure intervention group

Culturally-tailored Alzheimer's Disease and precision medicine educational brochure.

Intervention Type OTHER

Culturally tailored video intervention group

Culturally-tailored Alzheimer's Disease and precision medicine educational video.

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* self-identify as American Indian or Alaska Native
* able to speak, read, and understand English
* age 40 or older
* has cognitive and decisional capacity to consent

Exclusion Criteria

* do not speak or read English
* vision or hearing impairments that would prevent reading a brochure or watching a video
Minimum Eligible Age

40 Years

Maximum Eligible Age

100 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Washington State University

OTHER

Sponsor Role collaborator

Missouri Breaks Industries Research, Inc.

OTHER

Sponsor Role collaborator

University of Colorado, Denver

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Spero Manson, PhD

Role: PRINCIPAL_INVESTIGATOR

University of Colorado, Denver

Locations

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Missouri Breaks Industries Research, Inc.

Rapid City, South Dakota, United States

Site Status

Countries

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United States

References

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Mehta KM, Yaffe K, Perez-Stable EJ, Stewart A, Barnes D, Kurland BF, Miller BL. Race/ethnic differences in AD survival in US Alzheimer's Disease Centers. Neurology. 2008 Apr 1;70(14):1163-70. doi: 10.1212/01.wnl.0000285287.99923.3c. Epub 2007 Nov 14.

Reference Type BACKGROUND
PMID: 18003939 (View on PubMed)

Castor ML, Smyser MS, Taualii MM, Park AN, Lawson SA, Forquera RA. A nationwide population-based study identifying health disparities between American Indians/Alaska Natives and the general populations living in select urban counties. Am J Public Health. 2006 Aug;96(8):1478-84. doi: 10.2105/AJPH.2004.053942. Epub 2006 Mar 29.

Reference Type BACKGROUND
PMID: 16571711 (View on PubMed)

Other Identifiers

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17-1627

Identifier Type: -

Identifier Source: org_study_id

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