Year: 2019
Type: article
Abstract: Approximately 25% of people living with Alzheimer's Disease (AD) present with non-memory impairment as the first sign of AD, including a progressive visual cognition syndrome, with relative hippocampal sparing, known as Posterior Cortical Atrophy (PCA). PCA syndromes may be more common than is recognized. Studies of PCA have the potential to lead to a greater understanding of AD onset, disease spread, and co-pathology. We are developing a Colorado PCA BioRegistry as a proof-of-concept for the creation of an International PCA BioRegistry. The Colorado PCA BioRegistry will aim to: 1) create standardized data collection tools for diagnosis and longitudinal follow-up; 2) create a biobank (blood, cerebrospinal spinal fluid, pathology); 3) collect retinal imaging and visual field perimetric data; and 4) guide the creation of an International PCA BioRegistry with the following future goals: develop standardized diagnostic and longitudinal assessments for patients with PCA; determine the natural history and progression of PCA; support studies of risk factors and etiology; support the development of clinical and fluid biomarkers for PCA; and establish a cohort of participants for future trials. We describe the evolving structure of the Colorado PCA BioRegistry, including feasibility data collected from a pilot PCA registry of 36 patients collected over 12 months, and we discuss how these developments shape the early stages of planning for the International PCA BioRegistry. It is anticipated, based on feasibility data, that enrollment in the Colorado PCA BioRegistry will begin in the middle of 2019. International collaboration will be important for successful development of a PCA BioRegistry. Data collection of standardized assessments and biological samples within an International PCA BioRegistry has the potential to support research efforts to understand focal cortical presentations of AD and non-AD pathology and improve clinical care and outcomes for people affected by PCA. 1. 2016 Alzheimer's Disease Facts and Figures. Alzheimer's & Dementia. 2016;12:459-509. 2. Duthey B. AD & Other Dementias. 2013;1-74. 3. Whitwell JL et al. Lancet Neurol. 2012;11:868–877. 4. Woodward F et al. Alzheimer's & Dementia. 2013;9:4;P525-P525. 5. Crutch SJ et al. Alzheimer's & Dementia. 2017;13(8):870-884.
Source: Alzheimer s & Dementia
Institutions: University of Colorado Anschutz, University Health Network, University of Toronto, Amsterdam Neuroscience, Amsterdam UMC Location Vrije Universiteit Amsterdam, Johns Hopkins University, Mayo Clinic, Mayo Clinic in Florida, Pitié-Salpêtrière Hospital, Institut du Cerveau, United States Air Force, Oregon Health & Science University
Language: English
Subfield: Psychiatry and Mental health
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W2980623371