Collaborative Approaches to Resources, Education and Support( CARES) grants
2023 CARES projects($ 110,000 total awarded) Barriers to Clinical Trial Participation in PSP, CBS and MSA Oregon Health & Science University and University of Montreal
Clinical trials in atypical Parkinsonism present increased and unique challenges compared to clinical trials in Parkinson’ s disease. Researchers will conduct a survey addressed to patients and care partners in the United States and Canada to identify barriers to clinical trial participation with atypical Parkinsonism. It will be available in English, French and Spanish and sent out through CurePSP’ s database / social media and via passive recruitment at across the Centers of Care. Identifying these challenges is an important step for planning trial infrastructure and budgeting as new therapies for PSP, CBS and MSA come down the pipeline.
Atypical Parkinsonism Bootcamp for Advanced Practice Providers Cleveland Clinic and Cleveland Clinic Lou Ruvo Center for Brain Health
A shortage of fellowship-trained movement disorders neurologists has forced tertiary care centers to rely on advanced practitioners( physician assistants, nurse practitioners) to help meet the unique needs of these patients. As atypical Parkinsonian disorders continue to impact more lives annually, the need for disease-specialized medical professionals could not be greater, as most general neurologists and primary care providers do not feel adequately prepared to care for these patients. To increase confidence in diagnosing and treating these rare diseases among neurology professionals, researchers will host a pilot training course on PSP, CBD, MSA and dementia with Lewy bodies geared towards nurse practitioners and physician assistants. If successful, this program can be replicated and made available to the greater medical community.
Art therapy in PSP: Studying the therapeutic effect on quality of life and caregiver stress Baylor College of Medicine and Vanderbilt University
In recent years, art therapy has garnered attention as a potentially effective intervention for individuals with neurodegenerative disorders such as Parkinson’ s disease. Art therapy encompasses a wide array of activities that promote cognitive and motor skills, including shape recognition, motion perception, sensory-motor integration, abstraction and eye-hand coordination. As a result, it holds promise as a therapeutic tool for addressing the intricate challenges faced by PSP people, although this has not been studied to date. This project will explore the feasibility of an 8-week virtual art therapy program for individuals with PSP and begin to investigate the art therapy as an intervention with people with PSP, with a focus on alleviating the symptoms associated with PSP, enhancing the overall quality of life for patients and reducing caregiver stress.