An Alzheimer's Disease Research Center
University of Pennsylvania neuropathologist Edward Lee, PhD received a grant from the National Institutes of Health (NIH) and the National Institute on Aging (NIA) to support a new career development workshop in neuropathology.
The grant allows up to 20 American Association of Neuropathologists (AANP) scholars to attend the three-year workshop. It will focus on promoting “Neurodegenerative Disease Neuropathology Research,” and Dr. Lee will co-direct the workshop.
Penn Memory Center Scholar, Dr. Shana Stites was featured on Fox29’s GoodDay Philadelphia this Wednesday. Dr. Stites spoke about Alzheimer’s disease’s affect on personality and behavior with caregiver and Fox29 employee Renee Odrick.
“Dementia is this umbrella, this collection of different types of symptoms…what’s causing that is different pathologies in Alzheimer’s.”
Dr. Stites has studied the effects of stigma on public perceptions of Alzheimer’s disease and researched the impact of disclosure of amyloid test results to people with elevated risk of the disease.
Watch the full segment on Fox29’s website here.
By Danny Yarnall
Michael Duong is expectantly waiting for the final product of his grandfather’s latest work of art: a clock.
He remembers when he would come home from kindergarten and marvel at the doodles of toys around the house, everyday items or fantastic chimeras and other mish-mashes of animals his grandfather would dream up.
But that was long before his grandfather received an Alzheimer’s diagnosis. Now Michael is administering a simple cognitive test where his grandfather has to draw a clock reading “8:20”.
A second-year medical student at the University of Pennsylvania, Michael splits his time between Philadelphia and his Lansdale home where he, his mother, father, and maternal grandparents live after emigrating from Vietnam between the 1970s and late 1980s.
“I found one way to reconnect with him: reprising my role as his personal art appreciator and collector,” Michael wrote in The Art of Caregiving, which appears in August’s edition of JAMA Neurology. His writing on the caregiving experience has also led him to be featured in Science and Penn Today.
He sees the drawings as emblematic of both the caregiver experience as well as the pattern of decline in Alzheimer’s. The clocks vary in detail and accuracy. One sketch from 2018 includes hands and evenly spaced numbers, and while earlier versions just have 8:20 scrawled on the middle of the face.
“It’s not a smooth slope, but more of a roller coaster with highs and lows,” Michael said.
By Danny Yarnall
Elder financial abuse is a growing problem. The perpetrators are not just phone scammers and greedy relatives, but professionals whose duty is to care for a disabled older adult. They gain and exploit an older adults’ trust, resulting in major financial losses. Terry Ann McIntosh, 75, was one such victim.
McIntosh was scammed by a woman she hired as a home caregiver who gained access to her Bank of America account through phone representatives despite failing security questions. No one at the bank notified McIntosh, not even during her weekly visits to her branch, according to Bloomberg News.
Dr. Lisa Walke, Chief of Geriatric Medicine, is seeing PMC patients
As a part of a growing collaboration between the Penn Memory Center and the Division of Geriatric Medicine, Lisa Walke, MD, will begin seeing former patients of Dr. Soumya Bollampally, who left at the end of September.
“We’re ecstatic to have my colleague Dr. Lisa Walke caring for our patients. She’s an esteemed geriatrician,” said PMC Co-Director Jason Karlawish, also a geriatrician. “Dr. Wolk and I are also excited about the opportunities to build collaborations between the Penn Memory Center and Division of Geriatric Medicine.”
Beginning November 27, Dr. Walke will begin caring for Penn Memory Center patients every other Wednesday from 8:30 a.m. to noon. She is not accepting new patients.
Biogen has announced it is bringing back an Alzheimer’s drug it previously deemed a failure and will now apply for regulatory approval from the Food and Drug Administration.
In a press release on October 22, 2019, the Boston-based biotech company reported that its drug aducanumab slowed cognitive decline in patients with early Alzheimer’s disease dementia and MCI due to Alzheimer’s disease. The reversal was based on new analyses of a larger dataset than was available after the trials were discontinued on March 21, 2019.
Biogen halted the trials based on the results of a “futility” analysis conducted by an independent data monitoring committee that concluded the drug was unlikely to yield a positive result.
The most recent review was conducted in consultation with the FDA, including data from patients that received the greatest exposure to a high dose of aducanumab between December 2018 and March 2019, according to STAT.
The review showed aducanumab to be “pharmacologically and clinically active” and that it reduced patients’ clinical decline based on the results of scores on the Clinical Dementia Rating (CDR). The CDR measure is performed by a clinician who interviews and examines the patient and a person who knows the patients well, such as a caregiver.
“While we are all happy that this may ultimately turn into a viable treatment, we should also be cautious until the research community and the FDA has an opportunity to review these data with the company,” said Dr. David Wolk, co-director of the Penn Memory Center and principal investigator for the aducanumab trials at Penn.
Dr. Wolk and his colleagues at the Penn Memory Center explained that they do not have full details of the review and the dataset, so it is difficult for them to know how convincing the data are and the future of this drug.
The results of Biogen’s analysis have not been subject to the peer-review process. The company plans to present the data at the Clinical Trials for Alzheimer’s Disease (CTAD) meeting in December 2019.
Biogen is currently working with the FDA to determine when participants in past studies can resume taking the drug, if they choose to, and the steps necessary for the FDA to review the data describing the drug’s risks and benefits. Biogen plans to file for approval in early 2020.
Dr. Jason Karlawish, co-director of the Penn Memory Center, explained, “These are early days and it remains to be seen how this drug will impact a disease that just 40 years ago was considered rare. As we and our colleagues learn more over the coming months, the Penn Memory Center will update our community.”
Penn Memory Scholar, Dr. Emily Largent, PhD, JD, RN, and Dr. Stephanie Morain PhD, MPH, of Baylor College of Medicine received the inaugural David Roscoe Award for an Early-Career Scholar’s Essay on Science, Ethics, and Society from the Hastings Center.
“Stephanie is a great friend and a great collaborator. We first met in grad school. Sharing this award with her feels particularly special given our history,” said Dr. Largent.
The award recognizes an essay on the social and ethical implications of advances in science and technology written that is accessible to a general audience. Their essay was chosen by a committee of Hastings Center Fellows from among 36 entries whose authors came from nine countries.
Their paper, “Recruitment and Trial-Finding Apps – Time for Rules of the Road,” which was published in the Journal of the National Cancer Institute in May, examines ethical issues that arise from a recent spur of trial recruitment apps such as PatientWing.
“While being excited about the promise these apps hold, we have to be mindful of potential ethical pitfalls,” she said.
In Dr. Largent and Dr. Morain’s research, they note trial finding apps have the potential to circumvent the traditionally clunky and slow methods of recruitment. However, user data sharing between app developers, misrepresentation in marketing materials, the cost of certain apps create an ethical minefield out of what is billed as a streamlined recruitment process.
In that streamlining, conflicts of interest arise. Novartis’ app, Clinical Trial Seek, has “Novartis trials,” as the default search option and users must actively select to view “All trials” as an alternative. The trials that prospective participants see may not really be the “best” match for them but the one that benefits trial sponsors or the app developer the most.
All the while, this burgeoning industry is moving at a pace too fast for regulators and human subjects protections bodies like the International Review Board (IRB) to reasonably accommodate.
“They disrupt traditional approaches to recruitment—where an investigator advertises a study to prospective participants—by introducing a third party into the mix. Our ethical and regulatory frameworks weren’t designed to accommodate that,” Dr. Largent said.
Dr. Largent and Dr. Morain suggest that awareness from app developers, research institutions, clinicians, regulators, and prospective research participants can stem the wave of issues that crop up on third-party apps.
The pair will be honored at the American Society for Bioethics and Humanities Conference in Pittsburgh, PA, on October 24-27, 2019.
The Journal of the National Cancer Institute has made the paper available for free for the next six months to celebrate the award. Read the full text here.
Even in retirement, Julius Hayes keeps himself busy, staying involved in his community and coaching high school baseball. But, year after year, he makes sure his schedule is clear for his annual ABC Study visit. A six-year participant, Hayes said he’s keeping the promise he made in 2013.
“It’s kind of like a social thing that I feel like I have to do to help in a small way,” he said.
Dear Caregivers,
We hear about the challenges you face every day as you place the needs of your loved one above your own. The Penn Memory Center wants to put you first with a free day of relaxation and self-care as a part of its 3rd annual Caregiver Retreat. The retreat will take place Saturday, November 2, 2019, at Ralston House Wellness Center from 9:00 am to 1:00 pm.
Treat yourself to a day of yoga, massages, meditation, creative art projects, and more. Lunch, coffee and snacks will be provided.
Parking is available on a first-come, first-served basis in the Ralston House parking lot (entrance on Ludlow Street), on Chestnut Street (metered parking) or in the parking garage at 34th and Ludlow streets.
You can RSVP to Alison Lynn at 215-360-0257 or alison.lynn@uphs.upenn.edu
The Laurence G. Branch Doctoral Student Research Award is an award which honors outstanding students for exceptional research during their training. Students must have completed a research project in areas of gerontology, aging and chronic illness and disability in adults, long-term care, or geriatrics.
Jordan will be recognized for his achievement during the APHA’s Aging and Public Health Section Awards Ceremony in November.