Comprehensive clinics simplify care for neurological diseases
Complex diseases are best treated by comprehensive care teams—a paradigm that makes a difference for patients with neurological disorders at Penn Medicine.
Sally Bauder first noticed a slight tremor in her right hand in 2012, when she was 57. Her primary care doctor diagnosed essential tremor, which a neurologist later confirmed. But by 2018, her handwriting was getting worse, and she was having trouble moving the computer trackpad when teaching students in her job as an AP biology teacher. “I said okay, let me find someone with more specialized knowledge,” she said. An acquaintance recommended the Parkinson’s Disease and Movement Disorders Center at Penn Medicine.
By then, Bauder had been reading up on movement disorders. When her doctor at Penn Medicine diagnosed her with Parkinson’s disease, she wasn’t surprised. “It was not what I wanted to hear—but I felt like I was definitely in the right place,” she said. Now 70, Bauder is a busy retiree and an active grandma to two young grandsons. A lot in her life has changed, but her confidence in the Parkinson’s Disease and Movement Disorders Center remains.
“The physicians here are all actively involved in research and on top of things,” she said. “I can drop a lot of the worry because I know whenever I have an examination, it will be comprehensive. And they specialize in treating all the things that could possibly happen to me as a result of Parkinson’s disease.”
“Multidisciplinary” may be the latest buzzword in medicine, but integrated care teams have long been the norm for managing neurological conditions at Penn Medicine, with specialized expertise concentrated in a few key hubs. “It’s very inefficient to have a provider for every subspecialty at every site across a health system,” said Raymond Price, MD, a professor of Neurology at Penn Medicine and chief of Neurology at Pennsylvania Hospital. “We need places where everything comes together.”
Pennsylvania Hospital is just such a place. It’s the longtime home of the Parkinson’s Disease and Movement Disorders Center, which includes programs for ataxia and dystonia. The hospital also serves as home base for Penn Medicine’s Huntington’s Disease Center and Comprehensive ALS Center. Those centers bring together experts across medicine—neurologists, of course, but also psychiatrists, pulmonologists, geneticists, physical and occupational therapists, speech and language therapists, dietitians, social workers, advanced practice providers, and other specialists who ensure patients have the medical, practical, and emotional support they need.
Medicine today is a team sport. “As the rate of knowledge in medicine has expanded, it’s getting harder and harder for any individual provider to be an expert in every facet of a disease,” Price said. Collaborative care teams streamline diagnosis and treatment, and better support patients’ caregivers and families, he added. “Everybody benefits from this type of approach.”
Replicating a model that works
Parkinson’s is the second most common neurodegenerative disorder after Alzheimer’s disease, and Penn Medicine has long taken a comprehensive approach to both disorders. Since 1990, the Penn Memory Center has coalesced expertise in treatment and research on Alzheimer’s and other memory disorders on Penn’s University City campus. The Parkinson’s Disease and Movement Disorders Center was founded in 1982 by now-emeritus Neurology Professors Howard Hurtig, MD and Matthew Stern, MD, together with Gwyn Vernon, CRNP, MSN. The center moved to Pennsylvania Hospital in 1997. From the start, it was designed both to bridge clinical research with foundational scientific discoveries at the Perelman School of Medicine, and to meet the unique needs of patients with movement disorders, which can be quite varied.
“Parkinson’s is a disease that, eventually, affects many different systems throughout the body—and patients can live a very long time with this disease,” said Meredith Spindler, MD, a professor of Clinical Neurology and medical director of the center’s Deep Brain Stimulation Program. “They need a team to help them through that journey.”
The same principle applies at Penn Medicine’s multidisciplinary centers dedicated to rare neurological diseases including ALS and Huntington’s disease.
For patients who have mobility impairments, breathing difficulties and fatigue, routine doctor visits can be both logistically challenging and physically overwhelming. Dedicated care centers help take the edge off, said Colin Quinn, MD, an associate professor of Clinical Neurology and director of the Penn Comprehensive ALS Center.
“The goal of the interdisciplinary clinic is to bring as many services to someone with ALS as we can in a single visit,” he said.
Rather than juggling appointments and planning multiple trips into the city, a patient might see their neurologist, have a physical therapy session, and consult with a speech therapist all in one day. Each of these centers has also expanded the use of telehealth, making it easier for patients to receive care from home.
“We are constantly thinking about what we can do to make visits better for patients,” Quinn said.
Patients with Parkinson’s, ALS, ataxia, and Huntington’s share many similar needs. Each multidisciplinary center includes dedicated neurologists and services such as physical, occupational, and speech therapy to address communication challenges that accompany these diseases.
Yet the multidisciplinary care model is also flexible enough to adapt to each patient’s unique needs. Integrated pulmonologists help ALS patients as the progressive disease affects their ability to breathe, for example, while the Parkinson’s clinic features neurosurgeons who specialize in deep brain stimulation to treat tremors. When Bauder began experiencing double vision, she was able to easily seek care from a neuro-ophthalmologist at the Parkinson’s clinic.
Other disorders present unique challenges. In Huntington’s, every child of a parent with the disease has a 50 percent chance of inheriting it, making genetic testing and family services critical facets of care.
“When you diagnose someone with Huntington’s disease, you’re diagnosing their whole family,” said Aaron Lasker, MD, an associate professor of Clinical Neurology and the director of Penn’s Huntington’s disease center, the only designated Huntington’s Disease Center of Excellence in the region. “These patients need to be supported and counseled and educated through the process of deciding whether to get tested or whether to get involved in clinical trials.”
Because these diseases are progressive, the care models are also designed to flex as patients’ needs change. Many patients require more hands-on care at the beginning of their treatment journey, as they receive a diagnosis and establish a plan. That plan often remains relatively stable for a period, until symptoms progress and their needs become more complicated.
At the same time, the list of new medications and neurosurgical interventions continues to expand. “The number of treatment options for patients with Parkinson’s is growing year by year,” Spindler said. “Managing so many drugs, and their side effects and interactions, is a big lift.” The scale and scope of the center ensure there are specialists with expertise in new and emerging therapies, she added, as well as experts who understand atypical Parkinson’s cases and other rare movement disorders.
Receiving treatment at a disease-specific center helps make sure no detail slips through the cracks. “There are all kinds of things we're doing to treat the whole patient, and not just their neurologic symptoms,” Price said.
Holistic care for movement disorders
While an approach that treats the whole person is valuable in any area of medicine, it is particularly important in domains of the brain, said Suzanne Reichwein, MSW, a social worker at the Parkinson’s Disease and Movement Disorders Center. “Neurology can be tricky because a lot of the time, we’re working with people who are coming in with vague symptoms,” she said. “Often people come to us after being bounced around from specialist to specialist, and they’re very frustrated and scared.”
Reichwein and her fellow social workers help patients manage those emotions, from first learning their diagnosis to adapting as the disease progresses. “From beginning to end, we have a lot of the pieces of the puzzle that help people live well,” Reichwein said. Those pieces include support groups, dance and exercise classes, and speakers who share advice on common issues like gait and balance problems.
Those offerings have been a lifeline, said Bauder, who is active in multiple support groups and trained to act as a mentor to newly diagnosed patients. “Before this I didn’t know anyone with Parkinson’s. The support I get from these groups is priceless,” she said.
There’s also a growing recognition of the emotional symptoms of the disease, Price said. Parkinson’s patients have increased rates of depression—not only because they are living with a progressive disease, but also because the disease process affects brain circuits involved in mood regulation. To support patients’ emotional and cognitive health, the center includes psychiatrists, neuropsychologists, and counselors experienced in treating patients with movement disorders.
The Huntington’s disease center also offers support programs for patients, including those who have the genetic mutation but have not yet developed symptoms. Each year, the center hosts a unique Juvenile Huntington’s Day program for both symptomatic and asymptomatic children. To further support patients—and the providers managing the stress of caring for patients with a terminal illness—the Huntington’s center recently added a clinic therapy dog named Katie. “We’ve gone from being a multidisciplinary clinic to a multi-species one,” Lasker said.
Fueling the future of care
Centralizing care for complex diseases also provides a robust platform for research on these complicated disorders. The multidisciplinary centers maintain large clinical databases and biobanks of samples from patients, providing an invaluable resource for lab scientists at the Perelman School of Medicine.
Penn researchers including Virginia M.-Y. Lee, PhD, the John H. Ware 3rd Professor in Alzheimer’s Research in Pathology and Laboratory Medicine, and the late John Q. Trojanowski, MD, PhD, were behind the 2006 discoveries of TDP-43, a protein that turns out to play a significant role in the vast majority of people with ALS, and of α-synuclein, a protein that aggregates in the brains of people with Parkinson’s. Since then, Penn Medicine has remained a hub for research deepening the understanding of these proteins’ roles in multiple diseases, driving discovery of potential new treatments for ALS and both biological pathways that drugs can target and earlier detection for Parkinson’s disease. Penn researchers are also exploring new therapies for Huntington’s, including the possibility of potentially curative gene-editing treatments.
“Huntington’s is a complicated disease to care for clinically, but genetically it’s relatively straightforward—and potentially solvable,” Lasker said.
As a nexus for research, Penn Medicine offers an ever-changing selection of clinical trials for patients with neurological diseases, giving patients access to emerging therapies that aren’t yet commercially available. In the past year, Price said, Penn offered nearly 150 clinical trials for Parkinson’s disease alone, many of which take place at the Pennsylvania Hospital clinic. In cases where trials are held at the Perelman Center for Advanced Medicine on the campus of the Hospital of the University of Pennsylvania, patients receive much of their follow-up monitoring and care at Pennsylvania Hospital’s multidisciplinary clinics, with the familiar providers who help patients feel at home.
Building on the success of those clinics, Pennsylvania Hospital continues to grow as a leader in neurological care. The hospital is establishing a new headache clinic that includes neurologists, social workers, and advanced practice providers who specialize in treating patients with migraines and other chronic headaches, a debilitating—and all-too-common—condition.
From headaches to Huntington’s, ALS to ataxia and other movement disorders, these types of interdisciplinary care models can make a huge difference in the lives of patients and their caregivers. But establishing such integrated, holistic programs is more complicated than it may seem. It requires a change to the status quo, and clearing the logistical hurdles involved in locating a range of services under one roof. There’s also the cost of integrating specialists such as dietitians, genetic counselors, and social workers who can’t always bill insurance companies for their services the same way that physicians do. “If the institution doesn’t support it, these clinics cannot survive on their own,” Quinn said.
Bauder is one of countless patients who are grateful that such centers are able to exist. “I’ve learned that most people with Parkinson’s disease aren’t treated by movement disorder specialists. I feel very fortunate to be in this situation with Penn,” she said. “I have this progressive degenerative neurological disease, and I could freak myself out—but I don’t, most of the time. I couldn’t get a better level of well-rounded clinical expertise and treatment, and that takes a big load off my mind.”
Student spotlight: A very personal mission to accelerate ALS science
By Carmen Lennon
When she enrolled as an MD-PhD student at the Perelman School of Medicine in 2018, Yentli Soto Albrecht didn't know she would lose her father to ALS just five years later, nor that she was also a carrier of a genetic risk for ALS and frontotemporal dementia (FTD).
At the time, Soto Albrecht was immersed in infectious disease research, studying how mitochondria influence viral replication. But after her father’s diagnosis and death from C9-related ALS, she made a remarkable pivot, redirecting her scientific career toward understanding and eventually preventing the diseases that have affected multiple members of her family.
Since completing her PhD in Cell and Molecular Biology, Soto Albrecht has become a catalyst for collaboration, connecting researchers across Penn and around the world to accelerate progress on C9orf72-related ALS and FTD, the most common genetic cause of both diseases. Through CureC9, the initiative she co-founded, she has helped unite scientists, clinicians, advocacy organizations, and industry partners around projects ranging from biomarker discovery and stem cell repositories to new therapeutic strategies.
What drives her work is a deeply personal sense of urgency.
“My goal used to be to run a lab and care for patients,” Soto Albrecht said. “Now my goal is to survive my genetic predisposition to ALS and FTD using science and medicine. I’ll give my ideas away for free. I'll connect people. I don't need credit. My stakes are surviving this.”
For Soto Albrecht, the path forward depends on breaking down barriers between disciplines, sharing data and resources more effectively, and identifying disease earlier, before irreversible neurological damage occurs. The goal is simple but profound: Move faster, so that future families facing ALS and FTD have options that hers did not.
Explore related stories about Parkinson’s and ALS research
Penn and Miami launch study to detect ALS and FTD with $26M grant
An effort is underway to identify biological changes that signal whether people carrying a genetic variant will develop ALS or frontotemporal dementia.