4.7 Article

Biomarker disclosure protocols in prodromal Alzheimer's disease clinical trials

Related references

Note: Only part of the references are listed.
Article Clinical Neurology

Identifying best practices for disclosure of amyloid imaging results: A randomized controlled trial

Agnetha D. Fruijtier et al.

Summary: This study investigated the impact of six communication strategies on amyloid disclosure in mild cognitive impairment (MCI) patients. It found that risk communication best practices resulted in the highest information recall, while recall in emotional support was better than the basic and elaborate information strategies. Risk communication best practices also led to the highest uncertainty, while teach-back and emotional support contributed to the highest evaluations of the physician and information. Overall, risk communication best practices, attending to emotions, and teach-back techniques enhance information recall and contribute to positive care evaluations for amyloid-PET results.

ALZHEIMERS & DEMENTIA (2023)

Article Clinical Neurology

Testing for Alzheimer Disease Biomarkers and Disclosing Results Across the Disease Continuum

Emily A. Largent et al.

Summary: Alzheimer's Disease (AD) is characterized by three pathologic processes: beta-amyloid, hyperphosphorylated tau, and neurodegeneration. Advances in measuring biomarkers of these processes have led to a growing interest in using AD biomarker tests in care and research. Therefore, a 5-step approach is proposed, including determining the appropriateness of testing, providing pretest education and consent, administering the test, disclosing the results, and follow-up for well-being.

NEUROLOGY (2023)

Editorial Material Clinical Neurology

Disclosing Alzheimer Disease Biomarker Results to Research Participants

Joshua D. Grill et al.

JAMA NEUROLOGY (2022)

Article Clinical Neurology

Development and design of a diagnostic report to support communication in dementia: Co-creation with patients and care partners

Aniek M. M. van Gils et al.

Summary: This study aimed to develop a personalized diagnostic report through a mixed-methods approach, involving surveys and focus group discussions with patients and care partners. The majority of participants valued the diagnostic report for summarizing test results in a brief and straightforward manner, including brain imaging and future expectations. Co-creation was identified as highly valuable in meeting the specific needs of end-users during the iterative design process.

ALZHEIMER'S & DEMENTIA: DIAGNOSIS, ASSESSMENT & DISEASE MONITORING (2022)

Article Clinical Neurology

Implications of preclinical Alzheimer's disease biomarker disclosure for US policy and society

Claire M. Erickson et al.

Summary: This article explores the broader social implications of disclosing Alzheimer's disease biomarkers and identifies challenges and preliminary solutions.

ALZHEIMER'S & DEMENTIA: DIAGNOSIS, ASSESSMENT & DISEASE MONITORING (2022)

Article Clinical Neurology

Development and design of a diagnostic report to support communication in dementia: Co-creation with patients and care partners

Aniek M. van Gils et al.

Summary: In this study, a personalized diagnostic report was successfully designed through co-creation with patients and care partners. Most participants agreed that the report should be brief, straightforward, and include diagnostic test results, including brain imaging.

ALZHEIMER'S & DEMENTIA: DIAGNOSIS, ASSESSMENT & DISEASE MONITORING (2022)

Article Clinical Neurology

Implications of preclinical Alzheimer's disease biomarker disclosure for US policy and society

Claire M. Erickson et al.

Summary: This article discusses the broader social implications of disclosing Alzheimer's disease biomarkers to cognitively unimpaired adults, identifying 10 challenges and offering preliminary solutions. With the field continuing to evolve, it is crucial to anticipate and address these broader ethical, legal, and social implications of disclosure.

ALZHEIMER'S & DEMENTIA: DIAGNOSIS, ASSESSMENT & DISEASE MONITORING (2022)

Article Geriatrics & Gerontology

Family members' perspectives on learning cognitively unimpaired older adults' amyloid-β PET scan results

Emily A. Largent et al.

Summary: The study found that most participants understood and valued the AD dementia risk information they received. Positive risk information elicited feelings of happiness and relief, while negative information led to disappointment and increased awareness of cognitive changes.

JOURNAL OF THE AMERICAN GERIATRICS SOCIETY (2021)

Article Clinical Neurology

Disclosure of individual research results at federally funded Alzheimer's Disease Research Centers

J. Scott Roberts et al.

Summary: This study found that Alzheimer's Disease Research Centers varied widely in how they disclosed research results to participants, with diagnostic and cognitive test results being more commonly returned than genetic or biomarker results.

ALZHEIMERS & DEMENTIA-TRANSLATIONAL RESEARCH & CLINICAL INTERVENTIONS (2021)

Article Geriatrics & Gerontology

Disclosure of Amyloid Status for Risk of Alzheimer Disease to Cognitively Normal Research Participants With Subjective Cognitive Decline: A Longitudinal Study

Taisei Wake et al.

AMERICAN JOURNAL OF ALZHEIMERS DISEASE AND OTHER DEMENTIAS (2020)

Article Clinical Neurology

Alzheimer's Prevention Initiative Generation Program: Development of an APOE genetic counseling and disclosure process in the context of clinical trials

Carolyn M. Langlois et al.

ALZHEIMERS & DEMENTIA-TRANSLATIONAL RESEARCH & CLINICAL INTERVENTIONS (2019)

Article Clinical Neurology

Targeting Prodromal Alzheimer Disease With Avagacestat A Randomized Clinical Trial

Vladimir Coric et al.

JAMA NEUROLOGY (2015)

Article Psychiatry

Effect of Knowledge of APOE Genotype on Subjective and Objective Memory Performance in Healthy Older Adults

Tara T. Lineweaver et al.

AMERICAN JOURNAL OF PSYCHIATRY (2014)

Article Geriatrics & Gerontology

Patient and carer views on participating in clinical trials for prodromal Alzheimer's disease and mild cognitive impairment

Vanessa Lawrence et al.

INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY (2014)

Article Clinical Neurology

Potential Impact of Amyloid Imaging on Diagnosis and Intended Management in Patients With Progressive Cognitive Decline

Michael Grundman et al.

ALZHEIMER DISEASE & ASSOCIATED DISORDERS (2013)

Article Clinical Neurology

Impact of molecular imaging on the diagnostic process in a memory clinic

Rik Ossenkoppele et al.

ALZHEIMERS & DEMENTIA (2013)

Article Medicine, General & Internal

International Work Group Criteria for the Diagnosis of Alzheimer Disease

Jeffrey L. Cummings et al.

MEDICAL CLINICS OF NORTH AMERICA (2013)

Article Clinical Neurology

Amyloid imaging, risk disclosure and Alzheimer's disease: ethical and practical issues

J. Scott Roberts et al.

NEURODEGENERATIVE DISEASE MANAGEMENT (2013)

Article Clinical Neurology

Health behavior changes after genetic risk assessment for Alzheimer disease: The REVEAL Study

Serena Chao et al.

ALZHEIMER DISEASE & ASSOCIATED DISORDERS (2008)