Collaborative Approaches to Resources, Education and Support( CARES) grants
2022 CARES projects($ 81,000 total awarded)
Improving Access to Care through Transportation and Internet Use for Patients with Atypical Parkinsonism
Johns Hopkins University and Massachusetts General Hospital
6 million people in the United States report transportation barriers that prevent them from their needed medical care. Additionally, recent research has found an increased need for telehealth delivery of specialty care to individuals with Parkinsonian disorders. This project will screen for patients with PSP, CBS & MSA who are challenged to arrange transportation to their neurology appointments, lack reliable internet access / devices for telehealth, or both; the investigators will arrange for transportation or internet-enabled tablets accordingly. This pilot program will test if this increased accessibility improves outcomes of patient access to care, self-reported quality of life and caregiver burden, and if these methods are scalable.
End-of-Life Care Preferences in Diverse Patients with Atypical Parkinsonism The University of Pennsylvania and the University of California San Diego
PSP, CBD and MSA lead to progressive physical and cognitive impairment and as a result, end of life care is an important concern. No prior study has explored perceptions of goal-concordant end of life care among persons with atypical Parkinsonism. This information is also critical for understanding disparities and developing new approaches to advance care planning in underserved populations and communities. This project seeks to understand the influence of sex, race, ethnicity and other sociodemographic factors on end of life care preferences and behaviors among persons with PSP, CBD or MSA. Knowledge gained from this study can inform interventions to improve access to palliative and hospice care services for people from historically underrepresented and racially diverse communities.
The Greater Chicago Alliance for Support and Education on PSP, CBD and MSA The University of Chicago, Rush University and Northwestern University
The three medical centers will co-host a virtual 10-week educational series that will cover disease pathology, diagnosis, common motor and non-motor symptoms, treatment strategies from a multidisciplinary perspective, current clinical trials, palliative care and support resources. Each session was recorded and will be available online for on demand viewing( CurePSP YouTube channel or website and each institution’ s website) and PDF copies of the lectures were also provided to participants. This project aims to unite the local PSP, CBD and MSA community in Chicago and offer an approach to education and support that can be replicated in other centers and regions.