Director, National Prion Disease Pathology Surveillance Center
Case Western Reserve University/University Hospitals Cleveland Medical Center
Clinical Core Co-Leader
Describe your role in the CADRC.
I oversee the Clinical Core (CC) of the CADRC, along with Dr. Jagan Pillai of the Cleveland Clinic Foundation, who is co-leader of the CC. The Clinical Core enrolls patients into the study and obtains several different clinical data, including cognitive testing, neurologic examination, blood work, brain MRI, brain PET, and cerebrospinal fluid tests. We also discuss the possibility of brain donation with the subject and their loved ones. These assessments are done every year and they are stored in a de-identified manner in a database that Cleveland area researchers can use for researching a variety of questions. These data are also sent to a central database that includes the same data from all of the other Alzheimer’s Disease Research Centers (ADRCs) located around the country. I see most of the CADRC participants at University Hospitals (UH), along with Dr. Rajeet Shrestha and Dr. Mohamed Elkasaby. University Hospitals has an excellent group of clinical research coordinators, including Lyndsi Powell and Gordon Williams, who are the main coordinators of our study at UH. They ensure that the patients are scheduled and evaluated as smoothly as possible.
Oftentimes, some of the assessments and procedures in the study are changed as the state of the art of Alzheimer’s Disease and Related Dementia field changes. In these instances, the Clinical Core leadership ensures that we are collecting the best and most reliable data possible for future research. The CC leadership also ensures that data are collected and handled in a standardized fashion across the University Hospital and Cleveland Clinic Foundation sites.
What do you see as new efforts/initiatives on the horizon?
We are very excited to start enrolling patients with a diagnosis of frontotemporal lobar degeneration (FTLD), which is a list of conditions that affect the frontal and temporal lobes of the brain. Oftentimes, these patients have early behavioral symptoms (behavioral variant frontotemporal dementia), language symptoms (primary progressive aphasia), or movement symptoms that can be similar to Parkinson’s disease (progressive supranuclear palsy and corticobasal degeneration).
FTLD is included as an Alzheimer’s Disease and Related Dementia and is important to study as these are rare diseases about which we are still learning a tremendous amount. FTLD patients in the ALLFTD (ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration) study at UH will have the option of being in both ALLFTD and the CADRC to maximize their impact on research.
Additionally, Cleveland Clinic Foundation will be rolling out a pilot study that examines disclosing Amyloid PET results to people that do not have symptoms of cognitive impairment. This study will examine how participants handle these data and will inform how best to relay this sensitive data as these findings put participants at risk of developing Alzheimer’s disease, despite not having any current cognitive symptoms. Eventually, this study will include both Cleveland Clinic Foundation and University Hospital CADRC sites.
An initiative that all ADRCs are contributing to is the new Clarity in Alzheimer’s Disease and Related Dementias Research Through Imaging study (CLARiTI), which provides funding for more brain scans for the duration of the study and the ability to do different types of brain scans, such as tau PET imaging.
What are the biggest upcoming challenges for the CADRC?
The biggest challenges will be coordinating all the different brain scans that will be done through CLARiTI as well as juggling the increasing amount of annual follow-up visits for people that have been enrolled in the CADRC from the beginning.
What are the goals for 2024?
The primary goal for 2024 is to ensure that the three aforementioned initiatives are launched and running smoothly. The CADRC, especially the Clinical Core, has a lot of moving parts across multiple institutions. Ensuring that everything is running as smoothly as possible, especially for the participants, will always be the priority. Additionally, the CADRC is funded in 5-year cycles. As we are approaching the CADRC’s renewal, we are also planning the best way to successfully reapply and continue the CADRC. This is important for the participants and patients of Northeast Ohio, as well as the many Alzheimer’s Disease and Related Dementia researchers that work at local academic and medical centers, including University Hospitals, the Cleveland Clinic Foundation, Case Western Reserve University, the VA Medical Center, Metrohealth, and Cleveland State University.