Abstract
Background: Genetic data help detect preclinical Alzheimer's disease and target individuals for clinical trials, making genetic research engagement critical for continued advancement in dementia prevention and treatment. Objective: To understand what individual and institutional factors may relate to provision of genetic samples within the Alzheimer's Disease Centers. Methods: Data from the National Alzheimer's Coordinating Center Uniform Data Set (2009-2016) were obtained along with genetic sample availability. Logistic regression was used to assess independent contributions of demographic and clinical characteristics to the probability of sample provision. Sites contributing data completed a brief survey exploring regulatory and scientific issues related to genetic research engagement. Results: Just over half (52.1%) of the 27,519 unique participants had genetic data available. Female sex, white race, non-Hispanic ethnicity, normal cognition, and greater than 5 years of follow-up were associated with greater probability of availability. Sites identified refusals as the most frequent barrier to sample provision, followed by staff availability. Conclusion: These results highlight the importance of strategies to promote minority engagement and encourage earlier genetic research participation.
| Original language | English |
|---|---|
| Pages (from-to) | 123-133 |
| Number of pages | 11 |
| Journal | Journal of Alzheimer's Disease |
| Volume | 69 |
| Issue number | 1 |
| DOIs | |
| State | Published - 2019 |
Bibliographical note
Publisher Copyright:© 2019 - IOS Press and the authors. All rights reserved.
Funding
The NACC database is funded by NIA/NIH Grant U01 AG016976. NACC data are contributed by the NIA-funded ADCs: P30 AG019610 (PI Eric Reiman, MD), P30 AG013846 (PI Neil Kowall, MD), P50 AG008702 (PI Scott Small, MD), P50 AG025688 (PI Allan Levey, MD, PhD), P50 AG047266 (PI Todd Golde, MD, PhD), P30 AG010133 (PI Andrew Saykin, PsyD), P50 AG005146 (PI Marilyn Albert, PhD), P50 AG005134 (PI Bradley Hyman, MD, PhD), P50 AG016574 (PI Ronald Petersen, MD, PhD), P50 AG005138 (PI Mary Sano, PhD), P30 AG008051 (PI Thomas Wisniewski, MD), P30 AG013854 (PI M. Marsel Mesulam, MD), P30 AG008017 (PI Jeffrey Kaye, MD), P30 AG010161 (PI David Bennett, MD), P50 AG047366 (PI Victor Henderson, MD, MS), P30 AG010129 (PI Charles DeCarli, MD), P50 AG016573 (PI Frank LaFerla, PhD), P50 AG005131 (PI James Brewer, MD, PhD), P50 AG023501 (PI Bruce Miller, MD), P30 AG035982 (PI Russell Swerdlow, MD), P30 AG028383 (PI Linda Van Eldik, PhD), P30 AG053760 (PI Henry Paulson, MD, PhD), P30 AG010124 (PI John Trojanowski, MD, PhD), P50 AG005133 (PI Oscar Lopez, MD), P50 AG005142 (PI Helena Chui, MD), P30 AG012300 (PI Roger Rosenberg, MD), P30 AG049638 (PI Suzanne Craft, PhD), P50 AG005136 (PI Thomas Grabowski, MD), P50 AG033514 (PI Sanjay Asthana, MD, FRCP), P50 AG005681 (PI John Morris, MD), P50 AG047270 (PI Stephen Strittmatter, MD, PhD).
| Funders | Funder number |
|---|---|
| NIA/NIH | U01 AG016976 |
| National Institute on Aging | P50AG005142 |
Keywords
- Alzheimer's disease
- genetic research
- patient participation
- surveys and questionnaires
ASJC Scopus subject areas
- General Neuroscience
- Clinical Psychology
- Geriatrics and Gerontology
- Psychiatry and Mental health
