NEW YORK (October 5, 2023) /PRNewswire/ — CurePSP has announced the designation of three new CurePSP Centers of Care, bringing the total to 33 centers across the United States and Canada. Vanderbilt University, Baylor College of Medicine and the University of Miami are now part of a network of specialized medical centers that aims to enhance access to early diagnosis, comprehensive care and support, and clinical research for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA).
PSP, CBD and MSA, which are considered “atypical parkinsonian syndromes,” often go underrecognized and underdiagnosed. Symptoms can progress rapidly, especially compared to the more common and well-known Parkinson’s disease, and include significant imbalance, vision trouble, uncoordinated movements and changes to swallowing. Additionally, autonomic dysfunction (e.g., blood pressure regulation, urinary control) is a hallmark feature of MSA, while PSP and CBD can present with cognitive impairment and difficulty expressing words. Medications, therapies and lifestyle modifications are utilized to manage symptoms and decrease safety risks, although there are no disease-modifying treatments at present.
“Building community and collaboration is critical for patients, families and healthcare professionals alike,” said Jessica Shurer, MSW, LCSW, director of clinical affairs and advocacy at CurePSP. “The continued growth of our care network is one impactful way we can work toward improving the standard of care for PSP, CBD and MSA.”
Dr. Ihtsham Haq, professor of neurology and co-director of the CurePSP Center of Care at the University of Miami, described his “delight” in joining a network committed to the delivery of interdisciplinary care and to finding a cure for these rare, neurodegenerative diseases.
“The Parkinson’s Disease Center and Movement Disorders Clinic at Baylor College of Medicine has long been recognized as one of the world’s leading clinical and research institutions for Parkinson’s disease and other movement disorders,” said Dr. Chi-Ying (Roy) Lin, assistant professor of neurology. “We look forward to working with peer centers to promote research efforts, diagnostic accuracy and level of awareness of the atypical parkinsonian disorders as well as education for the next generation of neurology professionals.”
For Dr. Amy Brown, assistant professor of neurology at Vanderbilt University, it is their specialty autonomics clinic, array of clinical trials and multidisciplinary team of movement disorders and cognitive neurologists, neuropsychologists, speech-language pathologists, genetic counselors, social workers and nurses that allow them to be well-equipped to meet the needs of people diagnosed with PSP, CBD or MSA.
“Through becoming a CurePSP Center of Care, our ability to care for our patients will only expand and strengthen,” Dr. Brown said.
About CurePSP Centers of Care:
The CurePSP Centers of Care program was established in 2017 with the mission to enhance access to accurate and early diagnosis, high-quality and state-of-the-art clinical care and comprehensive support for PSP, CBD and MSA; serve as regional leaders and resources for those affected by PSP, CBD and MSA and healthcare professionals; increase awareness of PSP, CBD and MSA among patients, families, healthcare professionals, policymakers and local and larger communities; and promote collaboration within the network to optimize standards of care delivery for PSP, CBD and MSA and to create opportunities for multi-center research initiatives. Centers must re-apply every three years based on established designation criteria. There are currently 31 designated centers in the United States and two in Canada, and CurePSP aims to continue expanding the network in the coming years. For a complete listing of CurePSP Centers of Care, visit https://info.curepsp.org/centers-of-care
Founded in 1990, CurePSP is the leading nonprofit organization dedicated to the awareness, care and cure for three neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). As a catalyst for new treatments and a cure, we establish important partnerships and fund critical research. Through our advocacy and support efforts, we enhance education, care delivery and quality of life for people living with PSP, CBD and MSA and their families. The voices of those we serve guide our priorities, and science, community and hope are at the heart of CurePSP’s mission and all of our services. CurePSP is a registered 501(c)(3) charity within the United States (Federal Employer ID Number: 52-1704978). Our work is possible thanks to the generosity and support of those in our community and beyond.