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The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All
The brain changes of Alzheimer’s disease and other degenerative dementias begin long before cognitive dysfunction develops, and in people with subtle cognitive complaints, clinicians often struggle to predict who will develop dementia. The public increasingly sees benefits to accessing dementia risk...
Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
IOS Press
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9901285/ https://www.ncbi.nlm.nih.gov/pubmed/35938255 http://dx.doi.org/10.3233/JAD-220458 |
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author | Rosen, Allyson C. Arias, Jalayne J. Ashford, J. Wesson Blacker, Deborah Chhatwal, Jasmeer P. Chin, Nathan A. Clark, Lindsay Denny, Sharon S. Goldman, Jill S. Gleason, Carey E. Grill, Joshua D. Heidebrink, Judith L. Henderson, Victor W. Lavacot, James A. Lingler, Jennifer H. Menon, Malavika Nosheny, Rachel L. Oliveira, Fabricio F. Parker, Monica W. Rahman-Filipiak, Annalise Revoori, Anwita Rumbaugh, Malia C. Sanchez, Danurys L. Schindler, Suzanne E. Schwarz, Christopher G. Toy, Leslie Tyrone, Jamie Walter, Sarah Wang, Li-san Wijsman, Ellen M. Zallen, Doris T. Aggarwal, Neelum T. |
author_facet | Rosen, Allyson C. Arias, Jalayne J. Ashford, J. Wesson Blacker, Deborah Chhatwal, Jasmeer P. Chin, Nathan A. Clark, Lindsay Denny, Sharon S. Goldman, Jill S. Gleason, Carey E. Grill, Joshua D. Heidebrink, Judith L. Henderson, Victor W. Lavacot, James A. Lingler, Jennifer H. Menon, Malavika Nosheny, Rachel L. Oliveira, Fabricio F. Parker, Monica W. Rahman-Filipiak, Annalise Revoori, Anwita Rumbaugh, Malia C. Sanchez, Danurys L. Schindler, Suzanne E. Schwarz, Christopher G. Toy, Leslie Tyrone, Jamie Walter, Sarah Wang, Li-san Wijsman, Ellen M. Zallen, Doris T. Aggarwal, Neelum T. |
author_sort | Rosen, Allyson C. |
collection | PubMed |
description | The brain changes of Alzheimer’s disease and other degenerative dementias begin long before cognitive dysfunction develops, and in people with subtle cognitive complaints, clinicians often struggle to predict who will develop dementia. The public increasingly sees benefits to accessing dementia risk evidence (DRE) such as biomarkers, predictive algorithms, and genetic information, particularly as this information moves from research to demonstrated usefulness in guiding diagnosis and clinical management. For example, the knowledge that one has high levels of amyloid in the brain may lead one to seek amyloid reducing medications, plan for disability, or engage in health promoting behaviors to fight cognitive decline. Researchers often hesitate to share DRE data, either because they are insufficiently validated or reliable for use in individuals, or there are concerns about assuring responsible use and ensuring adequate understanding of potential problems when one’s biomarker status is known. Concerns include warning people receiving DRE about situations in which they might be compelled to disclose their risk status potentially leading to discrimination or stigma. The Advisory Group on Risk Evidence Education for Dementia (AGREEDementia) welcomes all concerned with how best to share and use DRE. Supporting understanding in clinicians, stakeholders, and people with or at risk for dementia and clearly delineating risks, benefits, and gaps in knowledge is vital. This brief overview describes elements that made this group effective as a model for other health conditions where there is interest in unfettered collaboration to discuss diagnostic uncertainty and the appropriate use and communication of health-related risk information. |
format | Online Article Text |
id | pubmed-9901285 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | IOS Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-99012852023-02-06 The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All Rosen, Allyson C. Arias, Jalayne J. Ashford, J. Wesson Blacker, Deborah Chhatwal, Jasmeer P. Chin, Nathan A. Clark, Lindsay Denny, Sharon S. Goldman, Jill S. Gleason, Carey E. Grill, Joshua D. Heidebrink, Judith L. Henderson, Victor W. Lavacot, James A. Lingler, Jennifer H. Menon, Malavika Nosheny, Rachel L. Oliveira, Fabricio F. Parker, Monica W. Rahman-Filipiak, Annalise Revoori, Anwita Rumbaugh, Malia C. Sanchez, Danurys L. Schindler, Suzanne E. Schwarz, Christopher G. Toy, Leslie Tyrone, Jamie Walter, Sarah Wang, Li-san Wijsman, Ellen M. Zallen, Doris T. Aggarwal, Neelum T. J Alzheimers Dis Editorial The brain changes of Alzheimer’s disease and other degenerative dementias begin long before cognitive dysfunction develops, and in people with subtle cognitive complaints, clinicians often struggle to predict who will develop dementia. The public increasingly sees benefits to accessing dementia risk evidence (DRE) such as biomarkers, predictive algorithms, and genetic information, particularly as this information moves from research to demonstrated usefulness in guiding diagnosis and clinical management. For example, the knowledge that one has high levels of amyloid in the brain may lead one to seek amyloid reducing medications, plan for disability, or engage in health promoting behaviors to fight cognitive decline. Researchers often hesitate to share DRE data, either because they are insufficiently validated or reliable for use in individuals, or there are concerns about assuring responsible use and ensuring adequate understanding of potential problems when one’s biomarker status is known. Concerns include warning people receiving DRE about situations in which they might be compelled to disclose their risk status potentially leading to discrimination or stigma. The Advisory Group on Risk Evidence Education for Dementia (AGREEDementia) welcomes all concerned with how best to share and use DRE. Supporting understanding in clinicians, stakeholders, and people with or at risk for dementia and clearly delineating risks, benefits, and gaps in knowledge is vital. This brief overview describes elements that made this group effective as a model for other health conditions where there is interest in unfettered collaboration to discuss diagnostic uncertainty and the appropriate use and communication of health-related risk information. IOS Press 2022-11-22 /pmc/articles/PMC9901285/ /pubmed/35938255 http://dx.doi.org/10.3233/JAD-220458 Text en © 2022 – The authors. Published by IOS Press https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) License (https://creativecommons.org/licenses/by-nc/4.0/) , which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Editorial Rosen, Allyson C. Arias, Jalayne J. Ashford, J. Wesson Blacker, Deborah Chhatwal, Jasmeer P. Chin, Nathan A. Clark, Lindsay Denny, Sharon S. Goldman, Jill S. Gleason, Carey E. Grill, Joshua D. Heidebrink, Judith L. Henderson, Victor W. Lavacot, James A. Lingler, Jennifer H. Menon, Malavika Nosheny, Rachel L. Oliveira, Fabricio F. Parker, Monica W. Rahman-Filipiak, Annalise Revoori, Anwita Rumbaugh, Malia C. Sanchez, Danurys L. Schindler, Suzanne E. Schwarz, Christopher G. Toy, Leslie Tyrone, Jamie Walter, Sarah Wang, Li-san Wijsman, Ellen M. Zallen, Doris T. Aggarwal, Neelum T. The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All |
title | The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All |
title_full | The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All |
title_fullStr | The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All |
title_full_unstemmed | The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All |
title_short | The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All |
title_sort | advisory group on risk evidence education for dementia: multidisciplinary and open to all |
topic | Editorial |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9901285/ https://www.ncbi.nlm.nih.gov/pubmed/35938255 http://dx.doi.org/10.3233/JAD-220458 |
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