CurePSP’s clinical guide to rare neurodegenerative conditions is published by leading neurology journal

Categories: News, Research News

Teams from the foundation’s Centers of Care compile the definitive guide to patient care


Frontiers in Neurology today published a groundbreaking guide to best practices in the clinical management of progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS) created under the auspices of CurePSP by the directors of its 25 Centers of Care and collaborators from their institutions.

Frontiers in Neurology is a leading journal in its field, publishing rigorously peer-reviewed articles across a wide spectrum of basic, translational, and clinical research intended to help improve patient care.

PSP and CBS are rare brain conditions with a relentless course, each usually starting in the mid-60s and leading to death in an average of seven years.  CBS is the most common symptomatic manifestation of the disease called corticobasal degeneration (CBD).  Most physicians, including many neurologists, are reluctant to care for patients with these conditions because of unfamiliarity with their multiplicity of complex, interacting, and debilitating symptoms. While there is as yet no specific or disease-modifying treatment for PSP or CBS, their symptoms are responsive to a variety of medication and nonmedication treatment strategies.

The guide was drafted by 37 top clinicians supervised by a steering committee comprising Lawrence I. Golbe, MD, emeritus professor of neurology at Rutgers University and CurePSP’s Director of Clinical Affairs, and three other specialists: Irene Litvan, MD, of the University of California, San Diego; Alexander Y. Pantelyat, MD, of The Johns Hopkins Hospital; and Brent Bluett, MD, of Stanford University. Dr. Golbe said, “As rare and complex diseases with no cures as yet, PSP and CBD have become ‘orphaned’ in the minds of many clinicians. This paper details the symptomatic management of these diseases and should help physicians and other clinicians become more familiar with these conditions and deliver the best possible care to patients.”

CurePSP’s Centers of Care are designated for their superior capabilities in caring for people with these “prime of life” neurodegenerative disorders, so named because they tend to strike younger in life than the more-familiar and far-more-common Alzheimer’s disease. The steering committee divided the subject into 12 areas, assigning each to its own writing committees composed of the Centers of Care site directors, all neurologists specializing in movement disorders or behavioral neurology, assisted by other clinicians from their institutions.  The steering committee then collated and edited the contributions and submitted the resulting draft to all 37 contributors for further suggestions.

The guide can be found at https://www.frontiersin.org/articles/10.3389/fneur.2021.694872/full