Cargando…

Highlighting the value of Alzheimer’s disease-focused registries: lessons learned from cancer surveillance

Like cancer, Alzheimer’s disease and related dementias (ADRD) comprise a global health burden that can benefit tremendously from the power of disease registry data. With an aging population, the incidence, treatment, and mortality from ADRD is increasing and changing rapidly. In the same way that cu...

Descripción completa

Detalles Bibliográficos
Autores principales: Miller, Margaret C., Bayakly, Rana, Schreurs, Bernard G., Flicker, Kimberly J., Adams, Swann Arp, Ingram, Lucy A., Hardin, James W., Lohman, Matthew, Ford, Marvella E., McCollum, Quentin, McCrary-Quarles, Audrey, Ariyo, Oluwole, Levkoff, Sue E., Friedman, Daniela B.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10196140/
https://www.ncbi.nlm.nih.gov/pubmed/37214775
http://dx.doi.org/10.3389/fragi.2023.1179275
_version_ 1785044280161599488
author Miller, Margaret C.
Bayakly, Rana
Schreurs, Bernard G.
Flicker, Kimberly J.
Adams, Swann Arp
Ingram, Lucy A.
Hardin, James W.
Lohman, Matthew
Ford, Marvella E.
McCollum, Quentin
McCrary-Quarles, Audrey
Ariyo, Oluwole
Levkoff, Sue E.
Friedman, Daniela B.
author_facet Miller, Margaret C.
Bayakly, Rana
Schreurs, Bernard G.
Flicker, Kimberly J.
Adams, Swann Arp
Ingram, Lucy A.
Hardin, James W.
Lohman, Matthew
Ford, Marvella E.
McCollum, Quentin
McCrary-Quarles, Audrey
Ariyo, Oluwole
Levkoff, Sue E.
Friedman, Daniela B.
author_sort Miller, Margaret C.
collection PubMed
description Like cancer, Alzheimer’s disease and related dementias (ADRD) comprise a global health burden that can benefit tremendously from the power of disease registry data. With an aging population, the incidence, treatment, and mortality from ADRD is increasing and changing rapidly. In the same way that current cancer registries work toward prevention and control, so do ADRD registries. ADRD registries maintain a comprehensive and accurate registry of ADRD within their state, provide disease prevalence estimates to enable better planning for social and medical services, identify differences in disease prevalence among demographic groups, help those who care for individuals with ADRD, and foster research into risk factors for ADRD. ADRD registries offer a unique opportunity to conduct high-impact, scientifically rigorous research efficiently. As research on and development of ADRD treatments continue to be a priority, such registries can be powerful tools for conducting observational studies of the disease. This perspectives piece examines how established cancer registries can inform ADRD registries’ impact on public health surveillance, research, and intervention, and inform and engage policymakers.
format Online
Article
Text
id pubmed-10196140
institution National Center for Biotechnology Information
language English
publishDate 2023
publisher Frontiers Media S.A.
record_format MEDLINE/PubMed
spelling pubmed-101961402023-05-20 Highlighting the value of Alzheimer’s disease-focused registries: lessons learned from cancer surveillance Miller, Margaret C. Bayakly, Rana Schreurs, Bernard G. Flicker, Kimberly J. Adams, Swann Arp Ingram, Lucy A. Hardin, James W. Lohman, Matthew Ford, Marvella E. McCollum, Quentin McCrary-Quarles, Audrey Ariyo, Oluwole Levkoff, Sue E. Friedman, Daniela B. Front Aging Aging Like cancer, Alzheimer’s disease and related dementias (ADRD) comprise a global health burden that can benefit tremendously from the power of disease registry data. With an aging population, the incidence, treatment, and mortality from ADRD is increasing and changing rapidly. In the same way that current cancer registries work toward prevention and control, so do ADRD registries. ADRD registries maintain a comprehensive and accurate registry of ADRD within their state, provide disease prevalence estimates to enable better planning for social and medical services, identify differences in disease prevalence among demographic groups, help those who care for individuals with ADRD, and foster research into risk factors for ADRD. ADRD registries offer a unique opportunity to conduct high-impact, scientifically rigorous research efficiently. As research on and development of ADRD treatments continue to be a priority, such registries can be powerful tools for conducting observational studies of the disease. This perspectives piece examines how established cancer registries can inform ADRD registries’ impact on public health surveillance, research, and intervention, and inform and engage policymakers. Frontiers Media S.A. 2023-05-05 /pmc/articles/PMC10196140/ /pubmed/37214775 http://dx.doi.org/10.3389/fragi.2023.1179275 Text en Copyright © 2023 Miller, Bayakly, Schreurs, Flicker, Adams, Ingram, Hardin, Lohman, Ford, McCollum, McCrary-Quarles, Ariyo, Levkoff and Friedman. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Aging
Miller, Margaret C.
Bayakly, Rana
Schreurs, Bernard G.
Flicker, Kimberly J.
Adams, Swann Arp
Ingram, Lucy A.
Hardin, James W.
Lohman, Matthew
Ford, Marvella E.
McCollum, Quentin
McCrary-Quarles, Audrey
Ariyo, Oluwole
Levkoff, Sue E.
Friedman, Daniela B.
Highlighting the value of Alzheimer’s disease-focused registries: lessons learned from cancer surveillance
title Highlighting the value of Alzheimer’s disease-focused registries: lessons learned from cancer surveillance
title_full Highlighting the value of Alzheimer’s disease-focused registries: lessons learned from cancer surveillance
title_fullStr Highlighting the value of Alzheimer’s disease-focused registries: lessons learned from cancer surveillance
title_full_unstemmed Highlighting the value of Alzheimer’s disease-focused registries: lessons learned from cancer surveillance
title_short Highlighting the value of Alzheimer’s disease-focused registries: lessons learned from cancer surveillance
title_sort highlighting the value of alzheimer’s disease-focused registries: lessons learned from cancer surveillance
topic Aging
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10196140/
https://www.ncbi.nlm.nih.gov/pubmed/37214775
http://dx.doi.org/10.3389/fragi.2023.1179275
work_keys_str_mv AT millermargaretc highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance
AT bayaklyrana highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance
AT schreursbernardg highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance
AT flickerkimberlyj highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance
AT adamsswannarp highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance
AT ingramlucya highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance
AT hardinjamesw highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance
AT lohmanmatthew highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance
AT fordmarvellae highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance
AT mccollumquentin highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance
AT mccraryquarlesaudrey highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance
AT ariyooluwole highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance
AT levkoffsuee highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance
AT friedmandanielab highlightingthevalueofalzheimersdiseasefocusedregistrieslessonslearnedfromcancersurveillance