NEW YORK, Jan. 20, 2023 /PRNewswire/ — CurePSP has announced the recipients of the first Collaborative Approaches to Resources, Education and Support (CARES) research grants. The goal of CARES is to improve the best practices in care for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). The launch of the CARES grants marks an important development in CurePSP’s objective to enhance clinical care for these complex “atypical parkinsonism diagnoses,” as they are often described because of early overlap with Parkinson’s disease symptoms.
“All 30 medical centers in our CurePSP Centers of Care network across the United States and Canada are united by the common goals of offering comprehensive care and enhancing quality of life for the PSP, CBD and MSA community,” said Jessica Shurer, director of clinical affairs and advocacy at CurePSP.
Eligibility for a CurePSP CARES grant includes:
- Collaboration between at least two CurePSP Centers of Care
- Focus on unmet needs in patient-centered approaches to delivering diagnostic services, assessment and therapeutic care, outreach to underserved communities or education of the medical community
- Designed to produce publishable and generalizable data
$81,000 has been allocated to the inaugural CARES grants, and CurePSP is dedicated to increasing funding for this innovative program.
“After visiting many of our CurePSP Centers of Care, I realized they all face different challenges and all have different approaches to address these challenges. They also have different yet complementary goals and strengths. These may include access to care, expansion of remote visits, managing clinical trials, connecting with regional networks of medical providers, implementing multidisciplinary care and educating patients and families on the importance of palliative care,” said Kristophe Diaz, executive director and chief science officer of CurePSP. “One critical objective of this new funding program is to create additional opportunities for centers to learn from each other and therefore accelerate how problems are addressed and solved.”
“When designing the CARES grants, we asked centers to collaborate with one another to understand and attend to the unique needs that exist for PSP, CBD and MSA,” Shurer said. “This is part of the mission for the CurePSP Centers of Care program, and it’s rewarding to create a new avenue for advancing CurePSP’s three pillars: care, consciousness and cure.”
Three projects from seven prestigious medical centers have been selected to receive a CARES grant for the 2022-2023 cycle.
Johns Hopkins University and Massachusetts General Hospital will identify patients who are lacking either reliable transportation to their appointments or internet access for telehealth appointments. The investigators will arrange for transportation or internet-enabled tablets. This pilot program will test if this increased accessibility improves outcomes and if these methods are scalable.
The University of Pennsylvania and the University of California San Diego will focus on end-of-life care preferences among diverse patients. This is an under-researched yet fundamental topic in PSP, CBD and MSA. Their joint project seeks to understand whether sex, race, ethnicity and other sociodemographic factors influence end-of-life care preferences and behaviors. Knowledge gained from this study can inform interventions to improve access to palliative and hospice care services for people from underserved communities.
The University of Chicago, Rush University and Northwestern University plan to create a Greater Chicago Alliance for Support and Education on PSP, CBD and MSA. The three centers will offer a 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. 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.