Observational research studies help scientists improve the understanding and diagnosis of Parkinson’s spectrum disorders, and clinical trials are the way new treatments are tested. Your participation in research helps the UCSF Parkinson’s Spectrum Disorders Center reach these goals. If one of the studies listed below looks interesting to you, please talk with your doctor or contact the PSDC study team to see if it is appropriate for you.
Improve Diagnosis of Parkinson's Disease, Progressive Supranuclear Palsy, Corticobasal Degeneration, Multiple System Atrophy, Lewy Body Disease, and Vascular Parkinson's Disease.
Investigators: Howard Rosen, MD, Katherine Possin, PhD & Jill Ostrem, MD
The goal of this project is to identify the best predictors of diagnosis, emphasizing distinctions between PD and PSP, CBD, MSA, LBD, and VaP, focusing on objective approaches that could be disseminated into the community. Patients with mild symptoms will be recruited. The project will conduct multidisciplinary evaluations in 50 patients with PD, 50 patients with PDD, 50 with PSP, 50 with CBD, 50 with MSA, 50 with LBD, 50 with VaP and 50 normal elders. Diagnosis will be rendered by expert MAC and MDNC clinicians using standard history, motor examination and cognitive assessments. Experimental testing will include quantitative motor, cognitive (including speech and language), psychiatric/emotional, and autonomic assessment, MRI, Tau-PET and fluid biomarkers. These will be supplemented by remote monitoring using telemedicine and wearable technology. We will determine the diagnostic value of each technique and use classification algorithms such as machine learning to identify the best combination for diagnosis. The ACET core will facilitate their adaptation into the community. Finally, we will examine prodromal features of these disorders through retrospective review of EMRs to identify earliest symptoms.
If you are interested in participating in this study or have any questions, please contact the study coordinator.
Study Sleep Mechanisms & Sleep-Related Therapies for Patients with Progressive Supranuclear Palsy
Investigators: Lea Grinberg, MD, PhD & Thomas Neylan, MD
The goal of this project is to quantify the relationship between sleep dysfunction in Parkinson’s spectrum disorders (PSD) and specific changes found at autopsy in order to identify ways to improve sleep quality and delay cognitive decline in these disorders. Our aim is to identify the differences in sleep-wake patterns between PSP and healthy controls (HC) and how these patterns change over time. We will then create a map of the degree of damage in specific sleep-regulating regions of the brainstem and hypothalamus in PSD and identify the relationships between the degree of damage in these regions and sleep-wake parameters obtained near the time of death.
If you are interested in participating in this study or have any questions, please contact the study coordinator.
New Therapies for Patients with Progressive Supranuclear Palsy & Atypical Parkinsonism
Investigator: Adam Boxer, MD, PhD
The goal of this project is to to develop innovative ways of doing drug trials that maximize the efficiency of the trial and allow more rapid approval of drugs. We are testing the efficacy of a new biological agent called BIIB092, which is an anti-tau monoclonal antibody. Tau is the protein that causes several disorders associated with parkinsonism, including progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS). We are using an innovative study design that will enroll patients with multiple clinical syndromes, including patients suffering primarily from language dysfunction (aphasia), combined movement and cognitive problems (CBS), combined cognitive and behavioral problems (traumatic encephalopathy syndrome), and patients carrying genetic mutations that cause accumulation of the tau protein. This design, called a “basket” design, has been used in cancer but never in neurodegenerative diseases. We will examine the ability of the drug to affect tau levels and other proteins in the cerebrospinal fluid, the safety of the drug, and brain imaging measures.
If you are interested in participating in this study or have any questions, please contact the study coordinator.
Deep Pathological Phenotyping of Progressive Supranuclear Palsy & Related Disorders
Investigator: William Seeley, MD
The goal of this project is to to build a new platform for more thorough characterization of neurodegenerative diseases using brain tissue obtained at autopsy. The goal is to better understand the factors that drive neurodegeneration. We have developed, in collaboration with GE Global Research, a new technique for labelling dozens of disease-relevant proteins, including multiple forms of tau, in a single tissue section. This technique will allow us to understand how different proteins affect different nerve cells, and thus how disease moves through the brain to cause symptoms. Our goals are to create a capacity to do these types of studies in brains from PSP patients at UCSF and to link findings from these techniques to findings obtained from brain imaging in humans during life and also to studies done by the Prusiner Laboratory of tau spreading through the brain
If you are interested in participating in this study or have any questions, please contact the study coordinator.
Discover Therapies for Progressive Supranuclear Palsy Using Novel Drug Discovery & Genetic Techniques
Investigators: Aimee Kao, MD, PhD & Jennifer Yokoyama, PhD
The goal of this project is twofold: First, to study how age interacts with other mechanisms to cause breakdowns in cellular function that ultimately lead to neurodegenerative diseases like PSP and other parkinsonian disorders. Recent work has focused on how progressive changes in the acid content (pH) in a small compartment of the brain cell called the lysosome affects the balance of healthy and toxic proteins in the brain. The second goal is to use analysis of each person’s genetic makeup (genomics) to identify variations that predict neurodegenerative diseases like PSP, and then strives to understand how these specific genetic variations lead to disease. We hope to develop a personalized genomics approach for prediction and early diagnosis of neurodegenerative disease.
If you are interested in participating in this study or have any questions, please contact the study coordinator.