A new designation for the MUSC Health Movement Disorders Program is a validation of the work program members have done over the last 15 years, said director Vanessa Hinson, M.D., Ph.D.
She recently learned the program has been named a Parkinson’s Foundation Center of Excellence, joining 45 other medical centers worldwide, including 31 in the United States.
The designation is highly respected and sought after by Parkinson’s researchers and clinicians, she said. Nor is it easy to get. The foundation opens its application process only sporadically.
Once the application process is open, centers must complete a lengthy written application and a two-day site visit — one day for foundation experts to speak with patients and see how the patients perceive the care they receive and one day to speak to the movement disorders team.
Being one of only a couple dozen Centers of Excellence within the U.S. has benefits for patients, Hinson said. The program will now have access to more money to expand community care programs and educational opportunities for patients. It will also be able to apply for funds for new and creative research ideas and have increased visibility, Hinson said.
“If we do good work but people don’t know about it, that doesn’t solve the problem. So we need to increase our visibility and let people with Parkinson’s and their families know that such specialists exist and they’re in their backyard, namely right here at MUSC,” she said.
Parkinson’s Foundation Centers of Excellence provide more than routine clinical care, although care is an important component of each center.
Each center is evaluated on:
Its reputation within the Parkinson’s community
The research it conducts
Its commitment to providing the best care to every person with Parkinson’s
Its commitment to serving the broader community
How it integrates research and care
Its demonstration of continuous and systemic improvement
Whether it meets the foundation’s patient and provider criteria
“The Center of Excellence designation recognizes the leaders in providing high-quality Parkinson’s care,” said John Lehr, president and chief executive officer of the Parkinson’s Foundation. “The Parkinson’s Foundation will continue to expand our reach across the country to ensure that every person diagnosed with Parkinson’s disease has access to treatments that will improve their quality of life today.”
Gathering all those components to create the movement disorders program as it is today took years of assembling the right people, training and finding the right space, Hinson said. The program is housed on Rutledge Avenue just off the main campus in a building that allows the team to easily share ideas and offers easy access for patients involved in research.
Today, the MUSC Health Movement Disorders Program includes seven neurologists with specialized training in Parkinson’s disease and movement disorders, two specialized neurosurgeons, neuropsychologists, speech therapists, physical therapists, occupational therapists, a social worker, a pharmacist, a Parkinson’s disease education nurse and researchers.
Hiring additional specialists in the last few years means that new patients have almost immediate access, Hinson said. The wait time for patient referrals has dropped from six months to just a week or two.
“The institution has put forward a major initiative in making us available to those who need us,” she said.
And although the full team works only on the main campus, regular clinical visits with movement disorders specialists are available in North Charleston and Mount Pleasant.
The new funding that could come with this designation will further help patients, Hinson said.
Each center receives $60,000 a year for five years to go toward something that is directly related to a benefit to the patient, whether that is hiring a nurse who can function as center coordinator, outreach person and education coordinator and “really take care of the patient in a way the hospital can’t afford because it’s not directly leading to billables,” Hinson said, or a new community offering such as an exercise program for those with Parkinson’s or a support group.
The program can also apply for grants from money that was raised during the Moving Day Walk on June 2. The Parkinson’s Foundation sponsors some 40 walks across the nation throughout the year to raise money for research and care, with funds remaining in the community in which they were raised.
This was the first year that Charleston participated, and the walk at James Island County Park raised more than $150,000. Hinson said it was so successful that the Parkinson’s Foundation has already scheduled the Charleston area for another walk in May 2019.
Hinson said she already has a few ideas for how she’d like to use the money. It could fund a monthly orientation day for people newly diagnosed with Parkinson’s. The orientation would include information from a Parkinson’s education nurse, a psychologist and a physician as to what the diagnosis means, what happens next and “what they can do to keep the Parkinson’s under check — not what the doctor can do, what they can do,” she said.
Funds could also support the annual symposium “Living with Parkinson’s,” which reaches 450 families each year. The symposium includes lectures, question-and-answer sessions, roundtable discussions and an exhibit on the latest research.
There is no cure for Parkinson’s or any treatment that can slow its progress. Right now, the best that can be done is to treat the symptoms.
But one of MUSC’s strengths is taking research out of the basic science lab and bringing it to patients, Hinson said.
In the last year, a collaboration has developed between the Movement Disorders Program and Heather Boger, Ph.D., in the Department of Neuroscience. Together they have worked on a potential new treatment for Parkinson’s, vagal nerve stimulation. In lab research, “tickling” or stimulating the vagus nerve of rats has stimulated central brain structures, which leads to the rats walking faster with better balance and has actually slowed the progression of the disease when compared to the animals who didn’t get the treatment.
The team is now moving to human trials, with a noninvasive vagal nerve stimulation project that hopes to improve motor function for patients. If the initial one-year study, which has just started, is promising, then the team will evaluate whether the nerve stimulation can actually slow the disease’s progression.
Gonzalo J. Revuelta, D.O., director of the Deep Brain Stimulation Program, is investigating a Parkinson’s symptom known as “freezing of gait” in which a person is stopped cold and can’t get moving again.
“That particular symptom is extremely disabling,” Hinson said. “Imagine you walk down the street and suddenly the brakes are pulled.”
Revuelta is working to understand which brain circuits are affected and how to improve the brain circuitry by using neuroimaging through the Center for Biomedical Imaging. Researchers then use MUSC’s Motion Analysis Lab in the College of Health Professions to determine whether the treatments have improved patients’ motor functions.
MUSC also partners with industry to study potential new treatments, such as a Parkinson’s vaccine. In this study, an antibody infusion is given to patients to help the body rid itself of a toxic protein, alpha-synuclein. The protein appears in everyone’s brain, Hinson said, but in Parkinson’s patients, the protein malfunctions and becomes so “sticky” that the brain can’t get rid of it. Consequently, brain cells begin to die. The potential vaccine is being tested at selected sites nationwide.
“We’re very excited to offer that to our patients,” Hinson said.
MUSC is also a site for a phase II study of nilotinib, a cancer drug that, when administrated in low doses to Parkinson’s patients, seemed to slow the disease in the small phase I study.
The progress in research in the last few years is exciting, Hinson said.“Any drug that I can prescribe only treats symptoms. It does not slow down the actual process of the disease, which is why we think it is so exciting that we now have studies that aim at the highest level of success, which is slow it down or stop it to begin with — stop it in its tracks.”