Collaborative Approaches to Resources, Education and Support( CARES) grants
2024 CARES projects($ 130,000 total awarded)
Assessing the gap in healthcare access, progression and survival in patients with atypical parkinsonism
University of Chicago and the Queen’ s Health System
There is a dearth of research on healthcare disparities and PSP, CBD or MSA. Modeled after a similar study looking at race and Parkinson’ s disease led by the University of Chicago( publication), this project will retrospectively review medical records and, when possible, perform clinical assessments of PSP, CBD and MSA patients seen across two medical institutions in communities with a large proportion of non-white populations. The project will evaluate differences in and factors that contribute to care access, disease progression and survival, taking an important step in understanding gaps and improving care for historically underserved communities.
Augmentative Speech Amplification Technology for Hypophonia in Atypical Parkinsonism Michigan State University and the University of Michigan
People with Parkinsonian conditions frequently present with soft, breathy voice(“ hypophonia”), which can make communication more challenging and therefore have a profound impact on socialization. However, voice treatments for PSP, CBD and MSA have not been well studied, especially in comparison to people with Parkinson’ s disease and taking into account the other unique speech symptoms that are common with PSP, CBD and MSA, including difficulties with word finding, slurred speech and controlling the rate of speech. This study will test the use of a voice amplifier on the intelligibility and quality of conversational speech with people with PSP, CBD and MSA and will contrast its effectiveness to that of control participants and people with Parkinson’ s disease.
Community Outreach and Needs Assessment Development for General Neurologists in Central California Managing Atypical Parkinsonian Disorders
Stanford University, Cedars-Sinai Medical Center and the University of California San Francisco
Three CurePSP Centers of Care in California seek to address the delay in diagnosis and access to care in atypical Parkinsonism for those residing in rural areas of the state where there is little access to movement disorders and behavioral neurologists. The project will start with a needs assessment to evaluate general neurologists ' perspectives on diagnosing and managing PSP, CBD and MSA. Utilizing the insights gleaned from these assessments, the group will then organize tailored inperson and virtual events to foster collaboration and disease-specific education. They hope that as a result they will be able to grow a regional and state-wide network of academic- and communitybased medical professionals with enhanced knowledge of PSP, CBD and MSA and establish more streamlined referral systems for both specialized care and clinical trials.