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Retention of American Indian and Alaska Native participants in the National Alzheimer's Coordinating Center Uniform Data Set.
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- Author(s): Conniff KR;Conniff KR; Grill JD; Grill JD; Grill JD; Grill JD; Gillen DL; Gillen DL; Gillen DL
- Source:
Alzheimer's & dementia : the journal of the Alzheimer's Association [Alzheimers Dement] 2024 Mar; Vol. 20 (3), pp. 1601-1613. Date of Electronic Publication: 2023 Dec 05.- Publication Type:
Journal Article; Research Support, N.I.H., Extramural- Language:
English - Source:
- Additional Information
- Source: Publisher: John Wiley & Sons, Ltd Country of Publication: United States NLM ID: 101231978 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1552-5279 (Electronic) Linking ISSN: 15525260 NLM ISO Abbreviation: Alzheimers Dement Subsets: MEDLINE
- Publication Information: Publication: 2020- : Hoboken, NJ : John Wiley & Sons, Ltd.
Original Publication: Orlando, FL : Elsevier, Inc. - Subject Terms:
- Abstract: Introduction: The number of American Indian and Alaska Native (AI/AN) elders is expected to double by 2060. Thus it is imperative to retain AI/AN participants in longitudinal research studies to identify novel risk factors and potential targets for intervention for Alzheimer's disease and related dementias in these communities.
Methods: The National Alzheimer's Coordinating Center houses uniformly collected longitudinal data from the network of National Institute on Aging (NIA)-funded Alzheimer's Disease Research Centers (ADRCs). We used logistic regression to quantify participant retention at 43 ADRCs, comparing self-identified AI/AN participants to non-Hispanic White (NHW) participants, adjusting for potential confounding factors including baseline diagnosis, age, sex, education, and smoking.
Results: The odds of AI/AN participant retention at the first follow-up visit were significantly lower than those for NHW participants (adjusted odds ratio [aOR]: 0.599; 95%: 0.46-0.78; p < 0.001).
Discussion: These results suggest the need for improved strategies to retain AI/AN participants, perhaps including improved researcher-community relationships and community engagement and education.
Highlights: American Indian and Alaska Native (AI/AN) research participants were retained to the first follow-up appointment at lower rates than non-Hispanic White (NHW) participants. AI/AN participants are retained at lower rates than NHW participants for long-term follow-up. The majority of AI/AN participants were not retained to the second follow-up visit.
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Alzheimers Dement. 2019 Jan;15(1):17-24. (PMID: 30243772) - Grant Information: P20 AG068053 United States AG NIA NIH HHS; P30 AG066515 United States AG NIA NIH HHS; P30 AG062421 United States AG NIA NIH HHS; P30 AG066508 United States AG NIA NIH HHS; P30 AG066519 United States AG NIA NIH HHS; P30 AG072973 United States AG NIA NIH HHS; P30 AG066462 United States AG NIA NIH HHS; P30 AG066530 United States AG NIA NIH HHS; P30 AG066509 United States AG NIA NIH HHS; P20 AG068077 United States AG NIA NIH HHS; P30 AG066546 United States AG NIA NIH HHS; P30 AG072972 United States AG NIA NIH HHS; P30 AG072979 United States AG NIA NIH HHS; P20 AG068082 United States AG NIA NIH HHS; P30 AG072975 United States AG NIA NIH HHS; P30 AG066444 United States AG NIA NIH HHS; P30 AG066507 United States AG NIA NIH HHS; P30 AG072946 United States AG NIA NIH HHS; P30 AG066518 United States AG NIA NIH HHS; P30 AG066511 United States AG NIA NIH HHS; U24 AG072122 United States AG NIA NIH HHS; P30 AG066512 United States AG NIA NIH HHS; RF1 AG075107 United States AG NIA NIH HHS; R01 AG061189 United States AG NIA NIH HHS; P30 AG072978 United States AG NIA NIH HHS; P30 AG062429 United States AG NIA NIH HHS; P30 AG062422 United States AG NIA NIH HHS; R01 AG079280 United States AG NIA NIH HHS; P30 AG072977 United States AG NIA NIH HHS; P30 AG062677 United States AG NIA NIH HHS; P20 AG068024 United States AG NIA NIH HHS; P30 AG072958 United States AG NIA NIH HHS; P30 AG062715 United States AG NIA NIH HHS; P30 AG066506 United States AG NIA NIH HHS; P30 AG066468 United States AG NIA NIH HHS; P30 AG072976 United States AG NIA NIH HHS; P30 AG072947 United States AG NIA NIH HHS; P30 AG072931 United States AG NIA NIH HHS; P30 AG066514 United States AG NIA NIH HHS; P30 AG072959 United States AG NIA NIH HHS
- Contributed Indexing: Keywords: Alzheimer's Disease Research Center (ADRC); Alzheimer's disease and related dementias (ADRD); American Indian and Alaska Native (AI/AN); National Alzheimer's Coordinating Center (NACC); National Alzheimer's Coordinating Center Uniform Data Set (NACC UDS); Native American Elders; data sovereignty; indigenous research; retention
- Publication Date: Date Created: 20231206 Date Completed: 20240318 Latest Revision: 20240715
- Publication Date: 20240716
- Accession Number: PMC10984415
- Accession Number: 10.1002/alz.13573
- Accession Number: 38053483
- Source:
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