Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals

Milne, Richard; Bunnik, Eline M.; Diaz, Ana; Richard, Edo; Badger, Shirlene; Gove, Dianne; Georges, Jean; Fauria, Karine; Molinuevo, José Luís; Wells, Katie; Ritchie, Craig W.; Brayne, Carol

doi:10.3233/jad-170813

Cited by 47 publications

(80 citation statements)

References 61 publications

(53 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The AD 2 scenario was chosen due to the ethical and social issues the disease poses and lack of efficient treatment options. On an individual and societal level, the disease is associated with fears concerning identity loss and future projections of responsibility for care (Milne et al 2018;Karlawish 2011). The pharmacogenetics scenario in the context of RC comprising research for stratification was chosen on the basis of considering options of or reactions to non-treatment if neoadjuvant treatment is deemed to be ineffective for tumor shrinkage.…”

Section: Methodsmentioning

confidence: 99%

Responsibility in dealing with genetic risk information

Wöhlke

Perry

2019

Soc Theory Health

View full text Add to dashboard Cite

Predictive testing information raises questions about risk communication, health responsibility, and about how to deal with the gap between knowledge of risks and options to act on this knowledge. For some diseases identified by predictive testing, specific treatments or interventions are available, while other diseases, thus far, remain untreatable or unpreventable; this triggers different forms of responsibility. Gender also often intersects with moral responsibility, regarding risk communication but also responsibilities of care which may become necessary with a family member's onset of disease. The aim of the study was to analyze laypeople's attitudes towards predictive testing with a special focus on forms of responsibility arising while dealing with uncertainty of risk information. We conducted seven focus groups with laypeople (n = 43) in four German cities in 2016. Participants were provided with different genetic testing scenarios (breast cancer, early-onset Alzheimer's disease, pharmacogenetics in rectal cancer) for discussing their responsibilities and risk perceptions. We identified three different forms of responsibility: self-responsibility and self-care, family responsibility and care for others, and professional responsibility. For laypeople, the decision for predictive genetic testing seems voluntary and free from external constraint; however, both family and professional conditions influence an individual's decision.

show abstract

Section: Methodsmentioning

confidence: 99%

Responsibility in dealing with genetic risk information

Wöhlke

Perry

2019

Soc Theory Health

View full text Add to dashboard Cite

show abstract

“…The ability to detect the AD CSF biochemical signature in pre-dementia and especially in pre-symptomatic subjects, raises some ethical issues [108] . Communication of a positive result in a non-demented subject may have adverse effects in quality of life and trigger significant emotional reactions [109] .…”

Section: Discussionmentioning

confidence: 99%

Cerebrospinal fluid biomarkers for cognitive disorders. An introductory overview

Paraskevas¹

2020

View full text Add to dashboard Cite

The core (established) cerebrospinal fluid biomarkers of Alzheimer's disease (AD), namely amyloid-beta peptide, total tau protein and phospho-tau protein, have become a part of the diagnostic workup of patients with cognitive disorders in many specialized centers, especially for ambiguous cases. Combined, these biomarkers can identify the presence or absence of an AD biochemical process with sensitivities and specificities approaching or exceeding 90% in both dementia and pre-dementia stages of AD. Thus, they have been incorporated in various sets of research or clinical diagnostic criteria and recommendations. Results that are atypical, incompatible with AD, or inconclusive may occur, necessitating the use of other cerebrospinal fluid or imaging biomarkers.

show abstract

“…Responsibility for planning participant involvement activities was identi ed at the outset of the project as a key task for the ethics workgroup in EPAD, and resources were allocated to the development of these activities at the outset of the project. This planning work built on learning from patient and public involvement work during the project setup with members of the public and patient groups (29), completed in collaboration with Alzheimer Europe and the European Working Group of People with Dementia, and building on the success of previous participant involvement activities (30,31). The scope of for potential participant input identi ed in this work included but was not limited to study design, understanding the research experience, input on communications and future planning.…”

Section: Introductionmentioning

confidence: 99%

Involving Research Participants in a Pan-European Research Initiative: The EPAD Participant Panel Experience

Gregory

Bunnik

Callado

et al. 2020

Preprint

Self Cite

View full text Add to dashboard Cite

Background: Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologies of how to set up and manage participant involvement activities. Further, there is little discussion of how to do so when dealing with collaborative projects that run across countries and operate in multiple linguistic and regulatory contexts. Methods: In this paper we describe the set-up, running and experiences of the EPAD participant panel. The EPAD study was a pan-European cohort study with the aim to understand risks for developing Alzheimer’s disease and build a readiness cohort for Phase 2 clinical trials. Due to the longitudinal nature of this study, combined with the enrolment of healthy volunteers and those with mild cognitive impairments, the EPAD team highlighted participant involvement as crucial to the success of this project. The EPAD project employed a nested model, with local panels meeting in England, France, Scotland, Spain and The Netherlands, and feeding into a central study panel. The local panels were governed by terms of reference which were adaptable to local needs. Results: The impact of the panels has been widespread, and varies from feedback on documentation, to supporting with design of media materials and representation of the project at national and international meetings. Conclusions: The EPAD panels have contributed to the success of the project and the model established is easily transferable to other disease areas investigating healthy or at-risk populations.

show abstract

Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals

Cited by 47 publications

References 61 publications

Responsibility in dealing with genetic risk information

Responsibility in dealing with genetic risk information

Cerebrospinal fluid biomarkers for cognitive disorders. An introductory overview

Involving Research Participants in a Pan-European Research Initiative: The EPAD Participant Panel Experience

Contact Info

Product

Resources

About