Jason Karlawish
Biographic Data
| ID | 1733559 |
|---|---|
| NAME | Jason Karlawish |
| GIVEN NAMES | Jason |
| FAMILY NAME | Karlawish |
| SIGNATURE | KARLAWISH J |
| AFFILIATIONS | University of Pennsylvania |
| ORCID | 0000-0002-6880-2865 |
| VERIFIED | Yes |
| TOTAL WORKS | 21 |
| TOTAL CITATIONS | 25 |
| AUTHOR COUNT | 21 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 2001 |
| LATEST PUBLICATION YEAR | 2026 |
| H-INDEX | 3 |
How do Persons With Dementia Suffer
This essay argues that suffering in persons with dementia is more than a matter of personal experience. It is knowable by others and does not need to rely on the reports of the patient to affirm it. It is even possible for a person to claim not to be suffering—“I’m doing fine”—but for others to conclude to the contrary—“You are suffering.” A key property of this objective account is the caregiver observes the suffering. This observation is a prod…
Theory-Based Message Design for Recruitment of Underrepresented Racial/Ethnic Groups Into Alzheimer’s-Focused Research Registries
Alzheimer’s disease (AD)-focused recruitment research registries can help identify eligible participants for AD studies, but registry participation is limited among racial and ethnic groups most at risk for AD. Using the Reasoned Action Approach (RAA), this study is part of a larger project to design theory-based persuasive recruitment messages that would encourage registry enrollment among underrepresented racial and ethnic groups. National surv…
Gender of Study Partners and Research Participants Associated With Differences in Study Partner Ratings of Cognition and Activity Level
SP and participant gender influence SPs' reports of another person's cognition and activity level. Our findings expand what is understood about how nondisease factors influence measures of disease severity
Predictors of who Serves as an Alzheimer’s Disease Research Participant’s Study Partner and the Impact of their Relationship on Study Partners’ Reports on Participants
Background: Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) research typically requires participants to enroll with a “study partner” (SP). Little is known about what predicts who steps into the SP role or whether the SP’s relationship to the participant affects their reports of disease severity.Methods: Health and Retirement Study data (HRS), collected prior to the Aging, Demographics and Memory Study (ADAMS), was used to…
Deciding with Others
Over the course of human life, health care decision‐making is often interdependent. In this article, we use “interdependence” to refer to patients’ engagement of nonclinicians—for example, family members or trusted friends—to reach health care decisions. Interdependence, we suggest, is common for patients in all stages of life, from early childhood to late adulthood. This view contrasts with the common bioethical assumption that medical decisions…
The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma
Developing an Economic and Policy Research Agenda for Blood Biomarkers of Neurodegenerative Diseases
In the past 2 decades, researchers have discovered biomarkers for the pathologic causes of neurodegeneration, such as -amyloid (A) and tau associated with Alzheimer disease and dopamine identified through DaTscan imaging to confirm Parkinson disease. These tests have reconceptualized the definitions of neurodegenerative diseases. As a result, biomarkers are changing how clinicians diagnose these diseases and may soon change how these diseases are…
Is the WHO Definition of Health Aging Well? Frameworks for “Health” After Three Score and Ten
Is the WHO Definition of Health Aging Well? Frameworks for “Health” After Three Score and Ten Cara Kiernan Fallon PhD, MPH, and Jason Karlawish MD Affiliation Cara Kiernan Fallon is with the Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia. Jason Karlawish is with the Departments of Medicine, Medical Ethics and Health Policy, and Neurology, Perelman School of Medicine, Universit…
NIA‐AA Research Framework
Amyloid in the Brain, Alzheimer's on the Mind
Twenty percent of patients diagnosed with Alzheimer's disease by experts like me in fact don't have elevated amyloid and so, in fact, don't have Alzheimer's. What they do have is the subject of intense research, and there are many possibilities. A recent study of one thousand brain autopsies from older adults with a range of cognitive impairment showed at least 230 combinations of neuropathology. The point is that while the disease will be treata…
Awareness of Mild Cognitive Impairment and Mild Alzheimer’s Disease Dementia Diagnoses Associated With Lower Self-Ratings of Quality of Life in Older Adults
Persons aware of their diagnostic label-either MCI or AD-and its prognosis report lower QOL than those unaware of these facts about themselves. These relationships are independent of the severity of cognitive impairment
A Typical Day With Mild Cognitive Impairment
The article discusses the Typical Day project which is designed to raise awareness, educate individuals, and provide opportunities for people affected by mild cognitive impairment (MCI) to photograph their daily lives and tell their stories. According to the article, the Typical Day project includes the www.MyTypicalDay.org Web site and a traveling exhibit. Professional photographer Damari McBride is addressed, along with several MCI patients fro…
The relative contributions of disease label and disease prognosis to Alzheimer's stigma
The Prompted Optional Randomization Trial
Randomized controlled trials are the gold standard for medical evidence because randomization provides the best-known protection against confounding of results. Randomization has practical and ethical problems that limit the number of trials that can be conducted, however. A different method for collecting clinical data retains the statistically useful properties of randomization without incurring its practical and ethical challenges. A computeri…
Measuring How People View Biomedical Research
With increasing numbers of studies on research ethics and a need to improve the recruitment of research subjects, the ability to measure attitudes toward biomedical research has become important. The Research Attitudes Questionnaire is a significant predictor of the public's attitudes toward and willingness to participate in research, yet limited data are available on its psychometric properties. This study establishes the scale's internal consis…
Research on Cognitively Impaired Adults
The preeminence of informed consent in human subjects protections reflects Western democratic societies' ethical and political commitments to secure each citizen against both coercive and paternalistic influences of other people. Society permits adults extensive personal discretion in choices such as where to live, what to eat, how to dress, and whether to be in research. In short, individuals are afforded extensive discretion in choosing what to…
Trends in the prevalence and mortality of cognitive impairment in the United States
BACKGROUND: Recent medical, demographic, and social trends might have had an important impact on the cognitive health of older adults. To assess the impact of these multiple trends, we compared the prevalence and 2-year mortality of cognitive impairment (CI) consistent with dementia in the United States in 1993 to 1995 and 2002 to 2004. METHODS: We used data from the Health and Retirement Study (HRS), a nationally representative population-based …
A Taxonomy of Value in Clinical Research
Medical research that involves human subjects presents what appears to be an intractable ethical problem: patients are exposed to risks in order to create valuable knowledge. A central goal of research is to produce knowledge that is "important," "fruitful," or that will have "value." Indeed, federal regulations require that research risks be reasonable in proportion to potential benefits, and in proportion to the importance of the knowledge to b…
Informed Consent for Alzheimer's Disease Clinical Trials
Jason H. T. Karlawish, David Knopman, Christopher M. Clark, John C. Morris, Daniel Marson, Peter J. Whitehouse, Claudia H. Kawas, Informed Consent for Alzheimer's Disease Clinical Trials: A Survey of Clinical Investigators, IRB: Ethics & Human Research, Vol. 24, No. 5 (Sep. - Oct., 2002), pp. 1-5
How Changes in Health Care Practices, Systems, and Research Challenge the Practice of Informed Consent
Informed consent has been the central model for ethical decision making in clinical care and research. The goal of informed consent is to protect the right of a competent person to make his or her own health care decisions based on personal values and goals. But changes in health care practices, systems, and research have challenged this well-established goal. This paper examines these changes to show that decisions about care and research direct…
Open Label Extension Studies & the Ethical Design of Clinical Trials
David Casarett, Jason Karlawish, Pamela Sankar, Karen B. Hirschman, David A. Asch, Open Label Extension Studies & the Ethical Design of Clinical Trials, IRB: Ethics & Human Research, Vol. 23, No. 4 (Jul. - Aug., 2001), pp. 1-5
The relative contributions of disease label and disease prognosis to Alzheimer's stigma
The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma
Awareness of Mild Cognitive Impairment and Mild Alzheimer’s Disease Dementia Diagnoses Associated With Lower Self-Ratings of Quality of Life in Older Adults
Persons aware of their diagnostic label-either MCI or AD-and its prognosis report lower QOL than those unaware of these facts about themselves. These relationships are independent of the severity of cognitive impairment
Measuring How People View Biomedical Research
With increasing numbers of studies on research ethics and a need to improve the recruitment of research subjects, the ability to measure attitudes toward biomedical research has become important. The Research Attitudes Questionnaire is a significant predictor of the public's attitudes toward and willingness to participate in research, yet limited data are available on its psychometric properties. This study establishes the scale's internal consis…
Open Label Extension Studies & the Ethical Design of Clinical Trials
David Casarett, Jason Karlawish, Pamela Sankar, Karen B. Hirschman, David A. Asch, Open Label Extension Studies & the Ethical Design of Clinical Trials, IRB: Ethics & Human Research, Vol. 23, No. 4 (Jul. - Aug., 2001), pp. 1-5
A Taxonomy of Value in Clinical Research
Medical research that involves human subjects presents what appears to be an intractable ethical problem: patients are exposed to risks in order to create valuable knowledge. A central goal of research is to produce knowledge that is "important," "fruitful," or that will have "value." Indeed, federal regulations require that research risks be reasonable in proportion to potential benefits, and in proportion to the importance of the knowledge to b…
Informed Consent for Alzheimer's Disease Clinical Trials
Jason H. T. Karlawish, David Knopman, Christopher M. Clark, John C. Morris, Daniel Marson, Peter J. Whitehouse, Claudia H. Kawas, Informed Consent for Alzheimer's Disease Clinical Trials: A Survey of Clinical Investigators, IRB: Ethics & Human Research, Vol. 24, No. 5 (Sep. - Oct., 2002), pp. 1-5
How Changes in Health Care Practices, Systems, and Research Challenge the Practice of Informed Consent
Informed consent has been the central model for ethical decision making in clinical care and research. The goal of informed consent is to protect the right of a competent person to make his or her own health care decisions based on personal values and goals. But changes in health care practices, systems, and research have challenged this well-established goal. This paper examines these changes to show that decisions about care and research direct…
Trends in the prevalence and mortality of cognitive impairment in the United States
BACKGROUND: Recent medical, demographic, and social trends might have had an important impact on the cognitive health of older adults. To assess the impact of these multiple trends, we compared the prevalence and 2-year mortality of cognitive impairment (CI) consistent with dementia in the United States in 1993 to 1995 and 2002 to 2004. METHODS: We used data from the Health and Retirement Study (HRS), a nationally representative population-based …
Research on Cognitively Impaired Adults
The preeminence of informed consent in human subjects protections reflects Western democratic societies' ethical and political commitments to secure each citizen against both coercive and paternalistic influences of other people. Society permits adults extensive personal discretion in choices such as where to live, what to eat, how to dress, and whether to be in research. In short, individuals are afforded extensive discretion in choosing what to…
Measuring How People View Biomedical Research
With increasing numbers of studies on research ethics and a need to improve the recruitment of research subjects, the ability to measure attitudes toward biomedical research has become important. The Research Attitudes Questionnaire is a significant predictor of the public's attitudes toward and willingness to participate in research, yet limited data are available on its psychometric properties. This study establishes the scale's internal consis…
The Prompted Optional Randomization Trial
Randomized controlled trials are the gold standard for medical evidence because randomization provides the best-known protection against confounding of results. Randomization has practical and ethical problems that limit the number of trials that can be conducted, however. A different method for collecting clinical data retains the statistically useful properties of randomization without incurring its practical and ethical challenges. A computeri…
The relative contributions of disease label and disease prognosis to Alzheimer's stigma
Awareness of Mild Cognitive Impairment and Mild Alzheimer’s Disease Dementia Diagnoses Associated With Lower Self-Ratings of Quality of Life in Older Adults
Persons aware of their diagnostic label-either MCI or AD-and its prognosis report lower QOL than those unaware of these facts about themselves. These relationships are independent of the severity of cognitive impairment
A Typical Day With Mild Cognitive Impairment
The article discusses the Typical Day project which is designed to raise awareness, educate individuals, and provide opportunities for people affected by mild cognitive impairment (MCI) to photograph their daily lives and tell their stories. According to the article, the Typical Day project includes the www.MyTypicalDay.org Web site and a traveling exhibit. Professional photographer Damari McBride is addressed, along with several MCI patients fro…
NIA‐AA Research Framework
Amyloid in the Brain, Alzheimer's on the Mind
Twenty percent of patients diagnosed with Alzheimer's disease by experts like me in fact don't have elevated amyloid and so, in fact, don't have Alzheimer's. What they do have is the subject of intense research, and there are many possibilities. A recent study of one thousand brain autopsies from older adults with a range of cognitive impairment showed at least 230 combinations of neuropathology. The point is that while the disease will be treata…
Is the WHO Definition of Health Aging Well? Frameworks for “Health” After Three Score and Ten
Is the WHO Definition of Health Aging Well? Frameworks for “Health” After Three Score and Ten Cara Kiernan Fallon PhD, MPH, and Jason Karlawish MD Affiliation Cara Kiernan Fallon is with the Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia. Jason Karlawish is with the Departments of Medicine, Medical Ethics and Health Policy, and Neurology, Perelman School of Medicine, Universit…
Developing an Economic and Policy Research Agenda for Blood Biomarkers of Neurodegenerative Diseases
In the past 2 decades, researchers have discovered biomarkers for the pathologic causes of neurodegeneration, such as -amyloid (A) and tau associated with Alzheimer disease and dopamine identified through DaTscan imaging to confirm Parkinson disease. These tests have reconceptualized the definitions of neurodegenerative diseases. As a result, biomarkers are changing how clinicians diagnose these diseases and may soon change how these diseases are…
Predictors of who Serves as an Alzheimer’s Disease Research Participant’s Study Partner and the Impact of their Relationship on Study Partners’ Reports on Participants
Background: Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) research typically requires participants to enroll with a “study partner” (SP). Little is known about what predicts who steps into the SP role or whether the SP’s relationship to the participant affects their reports of disease severity.Methods: Health and Retirement Study data (HRS), collected prior to the Aging, Demographics and Memory Study (ADAMS), was used to…
Deciding with Others
Over the course of human life, health care decision‐making is often interdependent. In this article, we use “interdependence” to refer to patients’ engagement of nonclinicians—for example, family members or trusted friends—to reach health care decisions. Interdependence, we suggest, is common for patients in all stages of life, from early childhood to late adulthood. This view contrasts with the common bioethical assumption that medical decisions…
The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma
Gender of Study Partners and Research Participants Associated With Differences in Study Partner Ratings of Cognition and Activity Level
SP and participant gender influence SPs' reports of another person's cognition and activity level. Our findings expand what is understood about how nondisease factors influence measures of disease severity
Theory-Based Message Design for Recruitment of Underrepresented Racial/Ethnic Groups Into Alzheimer’s-Focused Research Registries
Alzheimer’s disease (AD)-focused recruitment research registries can help identify eligible participants for AD studies, but registry participation is limited among racial and ethnic groups most at risk for AD. Using the Reasoned Action Approach (RAA), this study is part of a larger project to design theory-based persuasive recruitment messages that would encourage registry enrollment among underrepresented racial and ethnic groups. National surv…
How do Persons With Dementia Suffer
This essay argues that suffering in persons with dementia is more than a matter of personal experience. It is knowable by others and does not need to rely on the reports of the patient to affirm it. It is even possible for a person to claim not to be suffering—“I’m doing fine”—but for others to conclude to the contrary—“You are suffering.” A key property of this objective account is the caregiver observes the suffering. This observation is a prod…
Medicine (16 works) · Psychology (16 works) · Disease (9 works) · Psychiatry (9 works) · Dementia (7 works) · Alzheimer's disease (6 works) · Cognition (6 works) · Dementia and Cognitive Impairment Research (5 works) · Gerontology (5 works) · Internal Medicine (5 works)