Parkinson’s Foundation Names Three New Centers of Excellence

Parkinson’s Foundation Research Centers 

The Parkinson’s Foundation has added three Centers of Excellence to its international network of expert care providers for Parkinson’s disease  patients.

The new centers are the University of Colorado Movement Disorders Center, Jefferson Health’s Comprehensive Parkinson’s Disease & Movement Disorder Center, and Indiana University School of Medicine. The addition brings the foundation’s total number of centers to 48, including 34 in the United States.

The network’s hospitals and academic centers provide specialized teams of neurologists, movement disorder specialists, physical and occupational therapists, and mental health professionals, who are at the leading edge of  treatments and innovations for Parkinson’s.

”The newly designated Centers of Excellence join a network that is setting the highest standards of care for people with [Parkinson’s] worldwide,” John L. Lehr, CEO and president of the foundation, said in a press release. “We are proud to further our commitment to improving the quality of life for people with Parkinson’s and making a difference in underserved communities across the country.”

In making its selections, the foundation gave priority to medical centers that, in their applications, emphasized underserved populations. Each selected center also had to demonstrate the ability to provide top-shelf, evidence-based, patient-focused care, and to conduct pertinent clinical investigations that center on patient needs. In addition, each center had to show leadership in professional training, and be meaningfully involved in patient education and community outreach.

“We learned so much about our own program going through the rigorous process to receive the designation as a Parkinson Foundation Center of Excellence,” said Maureen Leehey, MD, professor of neurology and chief of the movement section at University of Colorado Anschutz Medical Campus.

”The team at the University of Colorado is thrilled to be part of a larger network of high-performing sites that allow us to share what we do well and create opportunities to raise the bar by incorporating successful programs from other sites,” Leehey said.

According to the press release, it’s likely only a “small percentage” of those living with Parkinson’s get optimal care from medical experts who specialize in the complicated disorder. The Center of Excellence network seeks to help remedy that. After five years, each center must recertify to ensure continuance of mandatory care standards.

Several centers are involved in the Parkinson’s Outcomes Project — the largest clinical investigation the foundation funds — which follows some 12,000 patients over time to learn which therapies work best. Indiana University participates in the PD GENEration effort, which provides free genetic counseling for the study.

Visit this website to find a Parkinson’s Foundation Center of Excellence, or call 800-4PD-INFO.

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Parkinson’s Foundation Adds 3 Centers of Excellence to Its Network

Ohio’s Cleveland Clinic will officially become a Parkinson’s Foundation Center of Excellence on Oct. 2, followed by the Medical University of South Carolina in Charleston on Oct. 4, and the Cleveland Clinic Nevada in Las Vegas on Oct. 19.
Next month’s three plaque unveiling ceremonies will bring the number of U.S. and overseas facilities bearing the designation to 48, said John Lehr, CEO of the Parkinson’s Foundation.
“The centers are already functional, and up and running,” Lehr told Parkinson’s News Today in a Sept. 26 phone interview. “What this designation means is that they have achieved a certain level of excellence as defined by the foundation. There’s a series of criteria we look at. All these facilities competed with 28 other potential centers, and after a careful yearlong review, we determined that these three were the best qualified to become centers of excellence.”
In other words, Lehr said, these three centers — along with the other 45 that have already received the designation — are “fully credentialed in terms of having movement disorder specialists and neurologists trained in Parkinson’s-specific issues.”
Such centers are staffed with teams of professionals in physical therapy, occupational therapy, social work, and mental health.
“They’re already providing patients with the full range of ancillary services and also conducting research,” said Lehr, estimating they serve a combined 120,000 Parkinson’s patients annually.
Parkinson’s Foundation CEO John Lehr
Among patient advocacy groups, the Centers of Excellence concept originated with the Cystic Fibrosis Foundation (CFF), where Lehr worked from 2004-2009 on the business side. Among other things at CFF, he ran a national campaign that raised $175 million — money that paid for the early-phase trials of the Vertex therapies that ultimately became Kalydeco (ivacaftor) and Orkambi (ivacaftor/lumacaftor).
“This is the same concept,” Lehr said. “In each disease-specific area where you have these types of centers, it’s a signal to patients with that disease — and their caregivers — that they can be assured they’re getting the highest level of care.”
The expansion of the Centers of Excellence project, first announced earlier this month, is funded through donations from individuals. The largest single gift — in the amount of $450,000 — comes from philanthropist Stephen Bittel, founder and CEO of the South Florida real-estate developer Terranova.
Last year, the nonprofit foundation — which has offices in New York and Miami — raised about $32 million in donations and channeled that money into three main areas: improving outcomes through better clinical care; funding basic clinical and epidemiological research to understand the causes and consequences of Parkinson’s; and investing in educational resources for people with and affected by Parkinson’s.
Of the foundation’s 45 currently designated Centers of Excellence, 32 are in the United States. The remaining 13 are scattered throughout the world, including Australia, Canada, Germany, Great Britain, Israel, the Netherlands, Singapore, Taiwan, and the United Arab Emirates.
A study funded by the Parkinson’s Foundation and published in July predicted that 930,000 Americans would be living with the disease by 2020, rising to more than 1.2 million by 2030. According to the “Parkinson’s Prevalence Project” report — published in the journal Nature — the estimated

Source: Parkinson's News Today

Excellent Choices for Parkinson’s Disease Care

While searching for a movement disorders doctor, I happened upon a government listing for Parkinson’s Disease (PD) Centers of Excellence, which fascinated me.
According to the Parkinson’s Foundation, PD Centers of Excellence deliver care worldwide to more than 127,000 patients. The centers “advance research to improve the lives of everyone with Parkinson’s treated at centers and beyond, and for future generations.” They also “provide patient education programs, community outreach programs and specialized Parkinson’s training for healthcare professionals.” The movement disorders team at each hospital must fulfill a list of criteria, which in turn leads to these specific centers being recognized by their medical peers as “leaders in PD care.”
The Parkinson’s Foundation says that folks from all the centers come together at least once a year to bring the latest information or offer updates on care initiatives and research. Each center is required to be recertified every three years, in a process that includes looking at the accomplishments of each center.
I was amazed. The patients who can see a movement disorder specialist in one of these centers must be so well taken care of. I think one of the main reasons is that there are accountability and integrity within these organizations. What does that mean to us as patients? We are better cared for, and the care we receive should be, according to their mission, top quality.
I happened upon a Center of Excellence because one of my doctors was a part of one. I can vouch for the fact that they truly exemplify “excellence.”
If you are not satisfied with the care you are receiving, feel your medical team may not be up to date with the latest care for you as their patient, or you just want to see if a change in care is warranted, get in touch with one near you (see the listings below). It’s definitely worth the call and maybe even the drive.
Centers of Excellence in the United States
– Barrow Neurological Institute, Muhammad Ali Parkinson Center
– University of Southern California, Parkinson’s Disease and Other Movement Disorders Center
– University of California, San Francisco, Parkinson’s Disease Clinic and Research Center (415) 476-9276
– The Parkinson’s Institute and Clinical Center, Sunnyvale, (408) 542-5646
District of Columbia
– Georgetown University Hospital, (202) 444-2333
– University of Florida, Parkinson’s Disease and Movement Disorders Center, Department of Neurology, (352) 273-5550
– University of Miami, Miller School of Medicine, Parkinson’s Disease and Movement Disorders Center
– University of South Florida, Parkinson’s Disease and Movement Disorders Center, (813) 844-4547
– Health Sciences University, Department of Neurology, (706) 721-2798
– Northwestern University, Parkinson’s Disease and Movement Disorders Center, Chicago, (312) 503-4397
– Rush University Medical Center, Chicago
– University of Kansas Medical Center, Parkinson’s Disease and Movement Disorder Center, (913) 588-7179
– University of Louisville, Movement Disorder Program, (502) 852-3655
– Johns Hopkins Medical Institute, Parkinson’s Disease and Movement Disorders Center, (410) 955-8795
– Massachusetts General Hospital, Wang Ambulatory Care Center, (617) 724-9234
– Beth Israel Deaconess Medical Center, Parkinson’s Disease and Movement Disorders Center, (617) 667-2699
– Struthers Parkinson’s Center, (952)993-5214
New York
– SUNY Downstate Medical Center/Kings County Hospital, Parkinson’s Disease and Related Disorders Clinic,

Source: Parkinson's News Today

Parkinson’s Foundation Holding Upcoming Team Training Program for Healthcare Professionals in Atlanta

The Parkinson’s Foundation’s next education program course for healthcare professionals who treat Parkinson’s patients will be held in Atlanta, the nonprofit announced in a press release.
Called Allied Team Training for Parkinson’s (ATTP), the three-day program will take place Oct. 17-20, with Emory University and the Medical College of Georgia — both Parkinson’s Foundation Centers of Excellence — serving as course partners.  
A Center of Excellence is an academic medical center with a specialized team of healthcare professionals who are on top of the latest Parkinson’s medications, therapies, and research. Globally, the foundation has 45 Centers, including 31 in the U.S.
Since 2002, ATTP has trained more than 2,000 healthcare professionals in North America. The curriculum comprises best practices based on cutting-edge research using a team-based approach. The course includes interactive case presentations and care planning with Parkinson’s patients and caregivers; patient and caregiver panels; and opportunities to network with national and regional health professionals.
“The Parkinson’s Foundation is committed to providing healthcare professions with the latest research and best practices that improve care for people living with Parkinson’s disease,” said John L. Lehr, president and CEO of the Parkinson’s Foundation. “Attendees will learn to deliver personalized and patient-centered care at the right time throughout the continuum of the disease.”
The program is designed for physicians, nurse practitioners, nurses, physician assistants, occupational therapists, speech language therapists, physical therapists, and social workers. Working in teams, participants will learn the best ways to care for those living with Parkinson’s.
Faculty will consist of senior movement disorder specialists. Go here for more information on what the course entails, and how to apply.
Registration rates are $500 per person, or $450 per person for teams of three or more. There is no charge for students and medical doctor fellows.
“Allied Team Training for Parkinson’s will change my group practice and how we interact as a team, which is critically important so that we can work together more efficiently and provide better care,” said George Wong, a board-certified neurologist and co-director of the Jared Neuroscience Center in Springfield, Missouri.
Future ATTP programs are slated for the University of Iowa (spring 2019), the Medical University of South Carolina (fall 2019), Massachusetts General Hospital (spring 2020), Struthers Parkinson’s Center in Minnesota (fall 2020), Oregon Health & Science University (spring 2021), and University of Kansas Medical Center (fall 2021).
“Allied Team Training for Parkinson’s fills an important educational need for practicing healthcare professionals by providing updates in assessment and treatment with simultaneous training in inter-professional team-based care,” said registered nurse and movement disorder specialist Ruth Hagestuen, who founded ATTP.
A particularly innovative and important course aspect has each participant developing treatment plans based on their own care setting and community, Hagestuen said.
For more information on the Parkinson’s Foundation’s other professional educational offerings, go here.
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Source: Parkinson's News Today

Parkinson’s Foundation Enrolls 10,000th Patient in Largest Clinical Trial of the Disease Ever

10,000th study participant

The Parkinson’s Foundation has enrolled the 10,000th patient in the largest clinical trial of the disease yet to be conducted.

Among the critical discoveries so far, the research has shown that regular visits to neurologists, more exercise, and more attention to mental health could help improve patients’ wellbeing.

The Parkinson’s Outcomes Project is evaluating a broad range of factors associated with the disease, including medications, treatments, movement symptoms, cognition, anxiety and depression, and the disorder’s burden on caregivers.

Launched in 2009, the project has become a comprehensive platform for studying the lives of Parkinson’s patients. And it has led to the formation of a consortium of 29 experts in five countries.

The study includes over 100 people who have lived with Parkinson’s for more than 30 years and 83 who learned about their diagnosis before they were 30 years old. Its records include 25,000 visits to doctors and information from almost 9,000 caregivers.

Key conclusions drawn from the study include:

Regular visits to neurologists should be a priority for patients and caregivers because it could save thousands of lives a year.

Recent research has listed regular visits to a neurologist as an important step in Parkinson’s management. However, in a 2011 study, only 58 percent of 138,000 Parkinson’s-related difficulties led to neurologist care. Race was a significant demographic predictor of neurologist treatment, with non-whites being less likely to receive care.

Doctors should give patients’ physical activity more attention because studies have shown that increasing exercise and movement to at least 2 1/2 hours a week can slow the decline in patients’ quality of life.

Researchers have found that, in Parkinson’s, it’s not the type of exercise a patient engages in, but the frequency of the workout that’s important. Physical therapists recommend exercises whose goals include improving balance and coordination, flexibility, endurance, and strength.

Patient’s mental health should be a priority because researchers have found that depression and anxiety are leading factors in patients’ overall health.

Depression is one of the most common non-movement symptoms of the disease, with up to 60 percent of patients affected at one time or another.

Finally, doctors should do a better job of addressing gender differences between patients. A key reason is that many men can rely on wives and other family members for daily support and doctor visits. Women are less likely to have family caregiver support and be more frequent users of formal, paid caregiver services.

This discovery is supported by recent findings that confirm these gender disparities, such as a study in Neurology in 2017.

“We have obtained a wealth of information in what now represents the broadest and most inclusive patient population ever assembled in a clinical study of Parkinson’s,” Peter Schmidt, the senior vice president of the Parkinson’s Foundation, said in a press release. He has been directing the study.

“This project is truly innovative in that it not only follows thousands of patients over time, but that it studies everyone with Parkinson’s, from the newly diagnosed to people who have lived with the disease for 30 years or more,” added Thomas Davis, the study’s co-chair.

Researchers have been using the Parkinson’s Foundation’s Centers of Excellence network of 42 medical centers to enroll patients in the study.

In addition, “we are studying the quality of Parkinson’s care delivered at our Centers of Excellence to help patients who aren’t being seen at one,” said Fernando Cubillos, who oversees the study’s operations. “Our goal is to help identify the best care and disseminate that information widely.”

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Source: Parkinson's News Today