|Home||Who We Are||Patient Care||Research||News & Events||Programs & Services||Gifts||Contact & Directions|
Robert Green, MD, MPH presented the grand rounds lecture titled Ethical Dilemmas in Genetics Research: When should subjects learn their results? on Tuesday, January 29 to a packed crowd in the Surgery Theater at the Hospital University of Pennsylvania. Dr. Green’s lecture addressed the question of how to proceed when discovering incidental findings in genetic research, such as discovering a subject’s likelihood to be a carrier for certain diseases, and the ethical implications that come with revealing that information to the subject or patient.
Dr. Green is a physician and scientist at the Brigham and Women’s Hospital and Harvard Medical School in the division of genetics and department of medicine. Dr. Green's research has led to key contributions in understanding genetic risk factors for Alzheimer’s disease, including the development of risk estimates based on family history and genetic markers.
It has the makings of a science fiction movie: Zap someone's brain with mild jolts of electricity to try to stave off the creeping memory loss of Alzheimer's disease. And it's not easy. Holes are drilled into the patient's skull so tiny wires can be implanted into just the right spot.
A dramatic shift is beginning in the disappointing struggle to find something to slow the damage of this epidemic: The first U.S. experiments with "brain pacemakers" for Alzheimer's are getting under way. Scientists are looking beyond drugs to implants in the hunt for much-needed new treatments. The research is in its infancy. Only a few dozen people with early-stage Alzheimer's will be implanted in a handful of hospitals. No one knows if it might work, and if it does, how long the effects might last.
Kathy Sanford was among the first to sign up. The Ohio woman's early-stage Alzheimer's was gradually getting worse. She still lived independently, posting reminders to herself, but no longer could work. The usual medicines weren't helping. Then doctors at Ohio State University explained the hope - that constant electrical stimulation of brain circuits involved in memory and thinking might keep those neural networks active for longer, essentially bypassing some of dementia's damage.
Sanford decided it was worth a shot. "The reason I'm doing it is, it's really hard to not be able, sometimes, to remember," Sanford, 57, said from her Lancaster, Ohio, home.
Read the full article on AP News
By James Flory and Jason Karlawish
“If there’s a blue pill and a red pill, and the blue pill is half the price of the red pill and works just as well, why not pay half price for the thing that’s going to make you well?”
With these words, President Barack Obama not only demonstrated his hip sci-fi credentials—Morpheus’s choice to Neo was either to take the blue pill and remain happy but ignorant of the truth, or the red pill, which would reveal to him a sometimes-painful reality and also launch the lucrative “Matrix” trilogy of movies—but also his desire to take a 21st-century, data-driven approach to clinical decision making and health care policy.
Among competing treatments for the same disease, which one is best? Which one is worth the money? These questions are the core of comparative effectiveness research. Half of insured patients in the United States are on chronic medications for conditions such as diabetes, hypertension, and high cholesterol. Patients, physicians, and policymakers need reliable data to know what to take, what to recommend, and what is worth paying for. Typically, however, they don’t have these data.
The Affordable Care Act, better known as Obamacare, has implemented a number of initiatives to address this problem. One of the largest is the Patient-Centered Outcomes Research Institute, or PCORI. A core mission of PCORI is to conduct comparative effectiveness research that gives patients and their health care providers the best evidence to help make more informed decisions. As promising and common sense as this mission is—because why not pay half price?—solid gold evidence to answer a patient’s question “Should I take the red pill or blue pill?” is hard to obtain.
Read the full article on Science Progress
The Perelman School of Medicine and the department of Medical Ethics and Health Policy at the University of Pennsylvania announce the creation of the Penn Neurodegenerative Disease Ethics and Policy Program. The new program will support research, education and training to identify and address the ethical and policy implications of advances in the diagnosis and treatment of neurodegenerative diseases, and work toward forming best practices for how these advances can be successfully translated into clinical practice.
With support from the Provost’s Office, the MetLife Foundation, the Michael J. Fox Foundation and the Robert Wood Johnson Foundation, the program will examine the ethical, legal and social impact of neurodegenerative diseases; develop best practices and guidelines for biomarker testing in clinical trials and clinical care; and examine the value of biomarker-based diagnostics and therapeutics. The program will also create “Making sense of Alzheimer’s Disease,” a web-based resource to educate patients, families and clinicians about these issues.
Jason Karlawish, MD, Associate Director of the Penn Memory Center and an international leader in the neuroethics of aging, will serve as the program's inaugural director. Karlawish describes the Program as “first of its kind. I’m honored to serve as the inaugural director.”
For many in the Alzheimer’s disease (AD) community, the Food and Drug Administration’s approval in April 2012 of florbetapir for imaging amyloid plaques in individuals being evaluated for AD or other causes of cognitive decline was bittersweet. The field celebrated the progress made in developing imaging biomarkers of AD, but it also mourned the loss of an individual whose contributions were critical for this success. In January 12th, 2012, Chris Clark died from the effects of a sarcoma, just 29 days after his 65th birthday.
Christopher M. Clark, MD, after retiring from the Department of Neurology at the University of Pennsylvania in 2007, became the Medical Director for AVID Radiopharmaceuticals in Philadelphia. In was in this role that he led the investigative team that ultimately demonstrated the ability of a florbetapir PET scan to detect brain deposits of Ab amyloid. This landmark research, published in the Journal of the American Medical Association in 2011, represented a key advance in the development of clinically applicable AD diagnostics. It also was the culmination of Chris’ career that was dedicated to moving AD from a poorly understood, rarely diagnosed disorder, to a widely recognized common cause of late-life dementia.
After training in neurology at Pennsylvania Hospital and the Columbia-Presbyterian Medical Center, in 1985 Chris took a faculty appointment at Duke University. He soon joined Al Heyman, MD, and others from Duke to establish the multicenter Consortium to Establish a Registry for Alzheimer’s Disease (CERAD), which was the first effort in the United States to standardize the clinical, cognitive, and neuropathological assessment of AD. Chris was a major contributor to CERAD’s Clinical Core, which relied on his clinical acumen and sound judgment to develop and implement a standard diagnostic approach to AD. Chris also served as the Clinical Core Leader for Duke University’s Joseph and Kathleen Bryant Alzheimer Disease Center (ADC) and directed Duke’s Memory Disorders Clinic. He then accepted a faculty appointment in the Department of Neurology at theUniversity of Pennsylvania in 1990 where, until his retirement in 2007, he led the Clinical Core of its ADC as well as serving as the ADC Associate Director. Chris was instrumental in establishing the Penn Memory Center, which he directed.
Chris had a particular talent for developing efficient and clinically applicable methods for the early and reliable diagnosis of AD that could be readily adopted into primary care practice. He co-developed the Dementia Severity Rating Scale, a self-administered scale that a family member could complete and whose scores assisted in diagnosing dementia and mild cognitive impairment. He also made important scholarly contributions to the development of therapies for AD, the characterization of cerebrospinal biomarkers for AD, and the exploration of the relationship between Parkinson’s disease and AD.
Beyond these accomplishments, he was a masterful clinician and was widely loved and revered by his patients and their families and highly regarded as a colleague by his peers. He was a wise mentor to many faculty and staff. People were drawn to Chris by his kindness, good humor, and willingness to listen carefully to what others had to say. When he deigned to speak, others listened intently because it was always carefully considered and constructive. Chris made almost any situation better by his involvement. He also was exceptionally well-rounded, with interests that went far beyond medicine. Among other interests, he enjoyed horseback riding, good food and drink, history, and travel. He was happiest when he could share his experiences with others, and most especially his beloved wife, Anne.
In the months that followed his death, as papers on florbetapir were published that bore his name with an asterix indicating “deceased,” we witness how his legacy endures. While an ambitious and deeply committed researcher, he had a quality that is perhaps uncommon amongst researchers. The work was not about him, but instead, it was about the cause. A colleague related a story of how in December 2011 he sent her a friendly email inquiring how she was and wishing her well. He asked about her children, but said little of himself. In the weeks that followed, he made many other contacts with colleagues and friends, finished papers, and took a final trip with Anne to The Netherlands. What few knew, and could not guess from his continued expressed joy of life, was that he had decided to cease further therapy for a tumor that was, sadly, relentlessly growing and soon to claim his life.
Most would say that there never is a good time to die, but up to his very last day, Chris Clark showed all of us a good way to live.
Published in Alzheimer's Disease and Associated Disorders, Volume 26, Number 4, October–December 2012