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By Varshini Chellapilla 

 If you tested positive for a biomarker of Alzheimer’s disease, whom would you tell? Why? 

 Penn Program on Precision Medicine for the Brain (P3MB) researcher Emily Largent, PhD, JD, RN, conducted two qualitative studies to understand individuals’ decision-making process as they choose whom, why and how to share information regarding their Alzheimer’s disease biomarker and genetic testing results. The study, titled “‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others,” was published in the Journal of Law and the Biosciences on May 19.   

The studies were done in collaboration with three other researchers from Penn Program on Precision Medicine for the Brain (P3MB): Shana Stites, PsyD, MS, MA; Kristin Harkins, MPH; and Jason Karlawish, MD.  

By Varshini Chellapilla 

Dr. David Wolk and Grace Stockbower

Clinical Research Project Manager Grace Stockbower, MPH, is moving on from the Penn Memory Center after eight years.  

Stockbower came to the center as a research specialist in 2013, after studying psychology and neuroscience at Haverford College. She worked exclusively on studies led by Dave Wolk, MD, PMC co-director.  

“We are extremely lucky that we had an opportunity to work with Grace over these last 8 years,” said Dr. Wolk. “She has played a tremendous role in the culture and operation of the Penn Memory Center and our research studies.  

Graphic illustration of a T2-weighted MRI with MTL subregion segmentation.

By Varshini Chellapilla 

Specialized high-field MRI scanners are some of the most advanced machines in medical research currently and have been equipped to study epilepsy, neurological disorders, and Alzheimer’s disease across many research fields. At Penn, the ultra-high-definition resolution of these MRIs helped researchers study the patterns of atrophy, or loss in volume due to degeneration of cells, in patients with semantic variant primary progressive aphasia (svPPA). 

“Volume loss in this region of the brain has been investigated in the past but never with scans as good as these,” said Laura Wisse, PhD, the principal investigator for the study. “With higher resolutions, we were able to measure this particular region of the brain in a much more detailed way.” 

Black adults are underrepresented in Alzheimer’s disease research, even though they are more likely to develop the disease. The Aging Brain Cohort Study Dedicated to Diversity will seek to enroll more Black participants like Jay Austin (above), to combat this disparity. Austin cited this disparity as his motivation for participating in research.

Black adults are more likely than other groups to develop Alzheimer’s disease or related disorders but are poorly represented in Alzheimer’s disease research, including recent clinical trials. This health disparity illustrates how Black individuals can benefit from advances in the field if they had access.  

This week, the Pennsylvania Department of Health’s Commonwealth Universal Research Enhancement (CURE) program announced it will award a $3.5 million grant to Penn Memory Center (PMC) researchers and community partners to address the underrepresentation of Black adults in Alzheimer’s disease research. The grant supports the Aging Brain Cohort Dedicated to Diversity (ABCD2) study, a research and training initiative led by David Wolk, MD, a professor of Neurology in the Perelman School of Medicine at the University of Pennsylvania. Wolk is also the incoming director of the Alzheimer’s Disease Research Center, and PMC co-director. 

By Sharnita Midgett

On Feb. 24, Penny Scott-Sedley walked into the Perelman Center, eager for her chance to move towards a safer world after a year of the pandemic.

As an ABC participant, normally she would hear from Penn Medicine about her upcoming ABC visit. However, this time, she received an email from Penn Medicine informing her that she could schedule her appointment for the first dose of the COVID vaccine. Scott-Sedley knew that there would be spring-like weather in Philadelphia on Feb. 24, so with excitement, she planned to receive her dose that Wednesday.

“I always was eager to become vaccinated once a vaccine was developed. It didn’t occur to me not to, especially not after it was reported that Blacks in this country were experiencing a much higher incidence of serious illness once contracting the virus and succumbing to it in higher numbers,” Scott-Sedley began.

Her appointment time was busy, but she noted that the process was extremely well-organized.

“It took no time to get through to the person who would perform the jab, and the wait afterwards for monitoring any adverse reactions was easy-peasy.”

She had no reactions after receiving the first dose of the Pfizer vaccine.

“As a Black woman of a certain age, I was aware of the historical struggle that Blacks have faced from racist and unethical scientists. Think the horrific Tuskegee Institute Scandal. But in this instance, we would not be singled out for the vaccine to the exclusion of other groups. So I considered it to be a safe bet.”

Most research is conducted with informed consent, a process that allows to the prospective participant to learn about the study through discussion with the investigator or study staff and to decide if participating is right for them. Yet, there are exceptions. In limited and strict circumstances, federal regulations governing human subjects allow for alterations or even waivers of informed consent. (Adobe Stock)

by Varshini Chellapilla

Most clinical trials are conducted in highly controlled environments to study the efficacy of a certain intervention. But the world we live in is often much messier than that.  

This is where pragmatic trials come in. Pragmatic trials are designed to study interventions in circumstances that closely approximate actual clinical practice as closely as possible. Some pragmatic trials include subjects who may not know that they are part of a clinical research. 

Research conducted by Penn Program on Precision Medicine for the Brain Researcher Emily Largent, PhD, JD, RN, and Stephanie Morain, PhD, MPH, an assistant professor at the Center for Medical Ethics and Health Policy at Baylor College of Medicine, looked at the data on public attitudes toward consent for pragmatic trials. The resulting article, published in The Hastings Center Report on April 11, was titled “Public Attitudes toward Consent When Research Is Integrated into Care—Any ‘Ought’ from All the ‘Is’?” 

“In order to make research as much like normal life or regular clinical practice as possible, it is often the case that we want to conduct the research without getting informed consent from participants,” Dr. Largent said. “Because once we tell people they’re in research, that can change what happens and who participates.” 

By Varshini Chellapilla
 

“Imagine a healthcare system incapable of diagnosing whether increasing numbers of older adults with weight loss, vague pains and anemia have cancer and, if they did, incapable of treating their cancer and caring for their common complications, such as pain and fatigue. That’s the problem for funding older adults with memory loss. The system is broken and a correction is needed to remedy this.” 

An excerpt from Penn Memory Center (PMC) Co-Director Jason Karlawish’s new book “The Problem of Alzheimer’s: How Science, Culture and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It,” the paragraph summarizes the roadblocks faced by people with Alzheimer’s disease and caregivers as they navigate the healthcare system, as identified by Dr. Karlawish.  

On March 18, Dr. Karlawish read an excerpt from his book and answered questions about the revolutionary moments of Alzheimer’s disease history, the names of experimental Alzheimer’s drugs, and his personal evolution as a physician at a virtual launch event hosted by PMC to commemorate the release of the book.  

Shana Stites, PsyD, MA, MS, was named assistant professor in the Department of Psychiatry at the Perelman School of Medicine. 

“I’m so excited for this new adventure. The scientific and professional opportunities are thrilling, and the company couldn’t be better,” said Dr. Stites. “It’s a privilege to have the chance to help improve care and quality of life for persons with Alzheimer’s.”