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Article ; Online: Communicating and Using Dementia Risk Evidence.

Rosen, Allyson C

2022 Volume 90, Issue 3, Page(s) 933–944

Abstract: Advances in biomarkers, genetics, and other data used as dementia risk evidence (DRE) are increasingly informing clinical diagnosis and management. The purpose of this Mini-Forum is to provide a solutions-based discussion of the ethical and legal gaps ... ...

Abstract	Advances in biomarkers, genetics, and other data used as dementia risk evidence (DRE) are increasingly informing clinical diagnosis and management. The purpose of this Mini-Forum is to provide a solutions-based discussion of the ethical and legal gaps and practical questions about how to use and communicate these data. Investigators often use DRE in research. When participants ask for their personal results, investigators have concerns. Will data that was intended to study groups be valid for individuals? Will sharing data cause distress? Debates around sharing DRE became heated when blood-based amyloid tests and amyloid reducing drugs appeared poised to enable clinicians easily to identify people with elevated brain amyloid and reduce it with a drug. Such an approach would transform the traditional role of DRE from investigational to foundational; however, then the high costs, uncertain clinical benefits and risks of the therapy led to an urgent need for education to support clinical decision making. Further complicating DRE use are direct to consumer genetic testing and increasingly available biomarker testing. Withholding DRE becomes less feasible and public education around responsible use and understanding become vital. A critical answer to these legal and ethical issues is supporting education that clearly delineates known risks, benefits, and gaps in knowledge, and communication to promote understanding among researchers, clinicians, patients, and all stakeholders. This paper provides an overview and identifies general concepts and resource documents that support more informed discussions for individuals and interdisciplinary groups.
MeSH term(s)	Humans ; Amyloid ; Biomarkers ; Brain ; Uncertainty ; Dementia/diagnosis
Chemical Substances	Amyloid ; Biomarkers
Language	English
Publishing date	2022-10-03
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	1440127-7
ISSN	1875-8908 ; 1387-2877
ISSN (online)	1875-8908
ISSN	1387-2877
DOI	10.3233/JAD-220722
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Article ; Online: The Ethics of Using Caregivers as Cognitive Testers.

Possin, Katherine L / Rosen, Allyson C

Journal of Alzheimer's disease : JAD

2022 Volume 90, Issue 4, Page(s) 1429–1431

Abstract: O'Caoimh et al. demonstrated that caregivers or family members could administer and score a brief cognitive screening instrument and detect cognitive impairment with comparable accuracy to similar measures administered in-person by trained staff. This ... ...

Abstract	O'Caoimh et al. demonstrated that caregivers or family members could administer and score a brief cognitive screening instrument and detect cognitive impairment with comparable accuracy to similar measures administered in-person by trained staff. This novel approach challenges us to consider the boundaries of how caregivers or other family members are used in remote testing. We discuss the potential risks of administration bias, test integrity, and impacts on the patient and caregiver or family member, and we recommend further research before incorporating this practice into routine clinical or research use.
MeSH term(s)	Humans ; Caregivers/psychology ; Cognitive Dysfunction/diagnosis ; Family ; Cognition
Language	English
Publishing date	2022-11-02
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	1440127-7
ISSN	1875-8908 ; 1387-2877
ISSN (online)	1875-8908
ISSN	1387-2877
DOI	10.3233/JAD-220862
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Article ; Online: Is there more to subjective cognitive impairment than meets the eye? Obligations and opportunities.

Rosen, Allyson C

Journal of Alzheimer's disease : JAD

2014 Volume 41, Issue 3, Page(s) 663–664

MeSH term(s)	Cognition Disorders/diagnosis ; Cognition Disorders/psychology ; Humans
Language	English
Publishing date	2014
Publishing country	Netherlands
Document type	Comment ; Journal Article
ZDB-ID	1440127-7
ISSN	1875-8908 ; 1387-2877
ISSN (online)	1875-8908
ISSN	1387-2877
DOI	10.3233/JAD-141293
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Article ; Online: TDCS in a patient with dreadlocks: Improvements in COVID-19 related verbal fluency dysfunction.

Rosen, Allyson C / Lavacot, James A / Porter, Ivan M / Chao, Steven Z / Bikson, Marom / Kumar, Abhilasha A / Cardenas, Valerie A

Brain stimulation

2022 Volume 15, Issue 1, Page(s) 254–256

MeSH term(s)	COVID-19 ; Frontal Lobe ; Humans ; Neuropsychological Tests ; SARS-CoV-2 ; Semantics ; Transcranial Direct Current Stimulation ; Verbal Behavior
Language	English
Publishing date	2022-01-08
Publishing country	United States
Document type	Letter
ZDB-ID	2394410-9
ISSN	1876-4754 ; 1935-861X
ISSN (online)	1876-4754
ISSN	1935-861X
DOI	10.1016/j.brs.2022.01.004
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Article ; Online: Are Disease Modifying Treatments Enough? Improving Quality of Life in Late-Stage Patients.

Rosen, Allyson C / Toy, Leslie / Langston, Ashley H

Journal of Alzheimer's disease : JAD

2019 Volume 68, Issue 4, Page(s) 1317–1319

Abstract: The potential for successful disease modifying treatments for Alzheimer's disease (AD) opens up the possibility that there will be a large cohort of patients living with late-stage dementia and poor quality of life. There must thus be a parallel effort ... ...

Abstract	The potential for successful disease modifying treatments for Alzheimer's disease (AD) opens up the possibility that there will be a large cohort of patients living with late-stage dementia and poor quality of life. There must thus be a parallel effort to leverage restorative therapies that improve quality of life in these patients. With the potential for stopping the onset of AD in new patients must come a commitment to those patients living with this chronic disability for many more years than first thought. Legal and ethical implications surrounding who makes decisions and equity in receiving care will become increasingly important if AD is no longer a terminal illness.
MeSH term(s)	Alzheimer Disease/drug therapy ; Decision Making ; Ethics, Medical ; Humans ; Palliative Care/ethics ; Quality of Life
Language	English
Publishing date	2019-03-18
Publishing country	Netherlands
Document type	Journal Article ; Research Support, U.S. Gov't, Non-P.H.S.
ZDB-ID	1440127-7
ISSN	1875-8908 ; 1387-2877
ISSN (online)	1875-8908
ISSN	1387-2877
DOI	10.3233/JAD-181193
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Article ; Online: Autobiographical recall of personally familiar names and temporal information in e-mails: An automatic analytic approach using e-mail communications.

Kumar, Abhilasha A / Hangal, Sudheendra / Rosen, Allyson C

Behavior research methods

2019 Volume 51, Issue 4, Page(s) 1510–1530

Abstract: An important question that arises from autobiographical memory research is whether the variables that influence memory in the laboratory also drive memory for autobiographical episodes in real life. We explored this question within the context of e-mail ... ...

Abstract	An important question that arises from autobiographical memory research is whether the variables that influence memory in the laboratory also drive memory for autobiographical episodes in real life. We explored this question within the context of e-mail communications and investigated the variables that influence recall for personally familiar names and temporal information in e-mails. We designed a Web-based program that analyzed each participant's year-old sent e-mail archive and applied textual analysis algorithms to identify a set of sentences likely to be memorable. These sentences were then used as the stimuli in a cued recall task. Participants saw two sentences from their sent e-mail as a cue and attempted to recall the name of the e-mail recipient. Participants also rated the vividness of recall for the e-mail conversation and estimated the month in which they had written the e-mail. Linear mixed-effect analyses revealed that recipient name recall accuracy decreased with longer retention intervals and increased with greater frequency of contact with the recipient. Also, with longer retention intervals, participants dated e-mails as being more recent than their actual month. This telescoping error was moderately larger for e-mails with greater sentiment. These findings suggest that memory for personally familiar names and temporal information in e-mails closely follows the patterns for autobiographical memory and proper-name recall found in laboratory settings. This study introduces an innovative, Web-based experimental method for studying the cognitive processes related to autobiographical memories using ecologically valid, naturalistic communications.
MeSH term(s)	Communication ; Cues ; Electronic Mail ; Humans ; Memory, Episodic ; Mental Recall ; Writing
Language	English
Publishing date	2019-02-04
Publishing country	United States
Document type	Journal Article
ZDB-ID	231560-9
ISSN	1554-3528 ; 0743-3808 ; 1554-351X
ISSN (online)	1554-3528
ISSN	0743-3808 ; 1554-351X
DOI	10.3758/s13428-018-1182-9
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Article ; Online: Use of percutaneous foam sclerotherapy with 1.5% sodium tetradecyl sulfate for treatment of a pelvic limb venous malformation in a dog.

Chang, Stephany / Weisse, Chick / Berent, Allyson C / Rosen, Robert J

Journal of the American Veterinary Medical Association

2020 Volume 256, Issue 12, Page(s) 1368–1374

Abstract: Case description: A 6-year-old 17-kg (37.4-lb) spayed female mixed-breed dog was evaluated because of swelling and intermittent lameness of the right pelvic limb and perianal and vulvar bleeding caused by a suspected arteriovenous malformation.: ... ...

Abstract	Case description: A 6-year-old 17-kg (37.4-lb) spayed female mixed-breed dog was evaluated because of swelling and intermittent lameness of the right pelvic limb and perianal and vulvar bleeding caused by a suspected arteriovenous malformation. Clinical findings: The right pelvic limb had a diffuse, raised, cobblestone-like appearance with lameness, edema, and multifocal ulcerations. The abdominal skin had multifocal circular erythematous lesions, the perianal region was erythematous, and the vestibule had superficial distended vessels. Ultrasonography and CT did not reveal the presence of an arteriovenous malformation; however, digital subtraction venography confirmed the presence of a venous malformation (VM) throughout the limb. Treatment and outcome: A mixture of foam sclerosant (1.5% sodium tetradecyl sulfate) and contrast medium was agitated with air and injected percutaneously into the VM. The dog received an injection of corticosteroid solution, and a soft-padded bandage was applied to the limb for 3 days. Six weeks later, the dog would intermittently hop when running, and the limb was mildly edematous with ecchymotic lesions; the swelling and lameness had improved considerably. Perianal and vulvar bleeding and dilation of the vestibular vessels had resolved. At 21 months after the procedure, examination revealed no right pelvic limb lameness related to the VM; only small cyst-like lesions and edema around the tarsus remained. Clinical relevance: The favorable clinical outcome for this dog for a 21-month period after treatment of a pelvic limb VM with foam sclerotherapy has suggested that foam sclerotherapy may be used to successfully treat limb VMs in some dogs.
MeSH term(s)	Animals ; Arteriovenous Malformations/therapy ; Arteriovenous Malformations/veterinary ; Cysts/veterinary ; Dog Diseases/drug therapy ; Dogs ; Female ; Sclerosing Solutions/therapeutic use ; Sclerotherapy/veterinary ; Sodium Tetradecyl Sulfate/therapeutic use ; Treatment Outcome
Chemical Substances	Sclerosing Solutions ; Sodium Tetradecyl Sulfate (Q1SUG5KBD6)
Language	English
Publishing date	2020-05-29
Publishing country	United States
Document type	Case Reports ; Journal Article
ZDB-ID	390811-2
ISSN	1943-569X ; 0003-1488
ISSN (online)	1943-569X
ISSN	0003-1488
DOI	10.2460/javma.256.12.1368
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Article ; Online: Functional magnetic resonance imaging (FMRI) in the classroom.

Rosen, Allyson C

The American journal of bioethics : AJOB

2009 Volume 9, Issue 1, Page(s) 30–31

MeSH term(s)	Adolescent ; Brain/physiology ; Brain/physiopathology ; Brain Mapping ; Child ; Cognition ; Education/ethics ; Humans ; Learning Disabilities/diagnosis ; Learning Disabilities/psychology ; Magnetic Resonance Imaging/ethics ; Thinking
Language	English
Publishing date	2009-01-07
Publishing country	United States
Document type	Journal Article ; Comment
ZDB-ID	2060433-6
ISSN	1536-0075 ; 1526-5161
ISSN (online)	1536-0075
ISSN	1526-5161
DOI	10.1080/15265160802617936
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Article ; Online: Different Diagnosis, Shared Vulnerabilities: The Value of Cross Disorder Validation of Capacity to Consent.

Rosen, Allyson / Weitlauf, Julie C

Journal of Alzheimer's disease : JAD

2015 Volume 46, Issue 1, Page(s) 11–13

Abstract: A screening measure of capacity to consent can provide an efficient method of determining the appropriateness of including individuals from vulnerable patient populations in research, particularly in circumstances in which no caregiver is available to ... ...

Abstract	A screening measure of capacity to consent can provide an efficient method of determining the appropriateness of including individuals from vulnerable patient populations in research, particularly in circumstances in which no caregiver is available to provide surrogate consent. Seaman et al. (2015) cross-validate a measure of capacity to consent to research developed by Jeste et al. (2007). They provide data on controls, caregivers, and patients with mild cognitive impairment and dementia. The study demonstrates the importance of validating measures across disorders with different domains of incapacity, as well as the need for timely and appropriate follow-up with potential participants who yield positive screens. Ultimately clinical measures need to adapt to the dimensional diagnostic approaches put forward in DSM 5. Integrative models of constructs, such as capacity to consent, will make this process more efficient by avoiding the need to test measures in each disorder. Until then, cross-validation studies, such as the work by Seaman et al. (2015) are critical.
MeSH term(s)	Alzheimer Disease/diagnosis ; Cognitive Dysfunction/diagnosis ; Cognitive Dysfunction/psychology ; Decision Making/physiology ; Female ; Humans ; Male ; Neuropsychological Tests ; Psychometrics
Language	English
Publishing date	2015
Publishing country	Netherlands
Document type	Journal Article ; Comment
ZDB-ID	1440127-7
ISSN	1875-8908 ; 1387-2877
ISSN (online)	1875-8908
ISSN	1387-2877
DOI	10.3233/JAD-143081
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Article ; Online: Disclosing Individual Results in Dementia Research: A Proposed Study Participant's Bill of Rights.

Walter, Sarah / Taylor, Angela / Tyrone, Jamie / Langer, Sara / Pagan, John-Richard / Hummel, Cynthia Huling / Wheaton, Bonnie M / Zallen, Doris T / Rosen, Allyson C

Journal of Alzheimer's disease : JAD

2022 Volume 90, Issue 3, Page(s) 945–952

Abstract: This Study Participant's Bill of Rights is a call to action for researchers in Alzheimer's disease and related dementias (ADRD) to proactively design clinical studies that provide the option for research participants to learn their individual research ... ...

Abstract	This Study Participant's Bill of Rights is a call to action for researchers in Alzheimer's disease and related dementias (ADRD) to proactively design clinical studies that provide the option for research participants to learn their individual research results if they choose, and in a manner that ensures study integrity. This Bill of Rights was crafted by a committee of study participants, care partners, representatives of dementia advocacy organizations, and other stakeholders in dementia research for the Advisory Group on Risk Education for Dementia (AGREEDementia). The framework developed by the Multi-Regional Clinical Trials (MRCT) Return of Individual Research Results provides a useful context for researchers to plan their studies and disclosure.
MeSH term(s)	Humans ; Alzheimer Disease ; Disclosure
Language	English
Publishing date	2022-10-24
Publishing country	Netherlands
Document type	Editorial
ZDB-ID	1440127-7
ISSN	1875-8908 ; 1387-2877
ISSN (online)	1875-8908
ISSN	1387-2877
DOI	10.3233/JAD-220810
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