The Impact of Experience with a Family Member with Alzheimer’s Disease on Views about the Disease across Five Countries

Blendon, Robert J.; Benson, John M.; Wikler, Elizabeth; Weldon, Kathleen J.; Georges, Jean; Baumgart, Matthew; Kallmyer, Beth

doi:10.1155/2012/903645

Cited by 27 publications

(24 citation statements)

References 8 publications

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“…The following data are from a survey conducted by the Harvard School of Public Health on the public perceptions and awareness of AD [70]. The poll was commissioned by Alzheimer Europe through a grant provided by Bayer.…”

Section: Value Of Knowingmentioning

confidence: 99%

Appropriate Use Criteria for Amyloid PET: A Report of the Amyloid Imaging Task Force, the Society of Nuclear Medicine and Molecular Imaging, and the Alzheimer’s Association

et al. 2013

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Positron emission tomography (PET) of brain amyloid b is a technology that is becoming more available, but its clinical utility in medical practice requires careful definition. To provide guidance to dementia care practitioners, patients, and caregivers, the Alzheimer's Association and the Society of Nuclear Medicine and Molecular Imaging convened the Amyloid Imaging Taskforce (AIT). The AIT considered a broad range of specific clinical scenarios in which amyloid PET could potentially be used appropriately. Peer-reviewed, published literature was searched to ascertain available evidence relevant to these scenarios, and the AIT developed a consensus of expert opinion. Although empirical evidence of impact on clinical outcomes is not yet available, a set of specific appropriate use criteria (AUC) were agreed on that define the types of patients and clinical circumstances in which amyloid PET could be used. Both appropriate and inappropriate uses were considered and formulated, and are reported and discussed here. Because both dementia care and amyloid PET technology are in active development, these AUC will require periodic reassessment. Future research directions are also outlined, including diagnostic utility and patient-centered outcomes.

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Section: Value Of Knowingmentioning

confidence: 99%

Appropriate Use Criteria for Amyloid PET: A Report of the Amyloid Imaging Task Force, the Society of Nuclear Medicine and Molecular Imaging, and the Alzheimer’s Association

et al. 2013

View full text Add to dashboard Cite

show abstract

“…The following data is from a survey conducted by the Harvard School of Public Health on the public perceptions and awareness of Alzheimer’s disease [70]. The poll was commissioned by Alzheimer Europe through a grant provided by Bayer.…”

Section: Amyloid Pet and Anticipated Impact On Patient Carementioning

confidence: 99%

Appropriate use criteria for amyloid PET: A report of the Amyloid Imaging Task Force, the Society of Nuclear Medicine and Molecular Imaging, and the Alzheimer's Association

Johnson

Minoshima

Bohnen

et al. 2013

Alzheimer's & Dementia

489

261

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Positron Emission Tomography (PET) of brain amyloid-beta is a technology that is becoming more available, but its clinical utility in medical practice requires careful definition. In order to provide guidance to dementia care practitioners, patients and caregivers, the Alzheimer Association and the Society of Nuclear Medicine and Molecular Imaging convened the Amyloid Imaging Taskforce (AIT). The AIT considered a broad range of specific clinical scenarios in which amyloid PET could potentially be appropriately used. Peer-reviewed, published literature was searched to ascertain available evidence relevant to these scenarios, and the AIT developed a consensus of expert opinion. While empirical evidence of impact on clinical outcomes is not yet available, a set of specific Appropriate Use Criteria (AUC) were agreed upon that define the types of patients and clinical circumstances in which amyloid PET could be used. Both appropriate and inappropriate uses were considered and formulated, and are reported and discussed here. Because both dementia care and amyloid PET technology are in active development, these AUC will require periodic reassessment. Future research directions are also outlined, including diagnostic utility and patient-centered outcomes.

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“…By unifying the message from clinical research we can increase the awareness of AD clinical trials taking place. Increasing awareness will improve public understanding towards the severity of the disease as it has been shown that individuals with close personal ties to patients with AD are more likely (than those without) to view AD as a major concern [63]. Consequently, this will not only reduce the number of undiagnosed individuals but will also serve to improve willingness to pursue predictive genetic and biomarker testing that may facilitate future asymptomatic enrollment.…”

Section: Social Legal and Policy Challengesmentioning

confidence: 99%

Ethical challenges in preclinical Alzheimer's disease observational studies and trials: Results of the Barcelona summit

Molinuevo

Camı́

Carné

et al. 2016

Alzheimer's & Dementia

Self Cite

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Alzheimer’s disease (AD) is among the most significant healthcare burdens. Disappointing results from clinical trials in late-stage AD persons combined with hopeful results from trials in persons with early-stage suggest that research in the preclinical stage of AD is necessary to define an optimal therapeutic success window. We review the justification for conducting trials in the preclinical stage and highlight novel ethical challenges that arise and are related to determining appropriate risk-benefit ratios and disclosing individuals’ biomarker status. We propose that to conduct clinical trials with these participants, we need to improve public understanding of AD using unified vocabulary, resolve the acceptable risk-benefit ratio in asymptomatic participants and disclose or not biomarker status with attention to study type (observational studies versus clinical trials). Overcoming these challenges will justify clinical trials in preclinical AD at the societal level and aid to the development of societal and legal support for trial participants.

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The Impact of Experience with a Family Member with Alzheimer’s Disease on Views about the Disease across Five Countries

Cited by 27 publications

References 8 publications

Appropriate Use Criteria for Amyloid PET: A Report of the Amyloid Imaging Task Force, the Society of Nuclear Medicine and Molecular Imaging, and the Alzheimer’s Association

Appropriate Use Criteria for Amyloid PET: A Report of the Amyloid Imaging Task Force, the Society of Nuclear Medicine and Molecular Imaging, and the Alzheimer’s Association

Appropriate use criteria for amyloid PET: A report of the Amyloid Imaging Task Force, the Society of Nuclear Medicine and Molecular Imaging, and the Alzheimer's Association

Ethical challenges in preclinical Alzheimer's disease observational studies and trials: Results of the Barcelona summit

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