Young-onset neurodegenerative diseases such as frontotemporal degeneration (FTD) and early-onset Alzheimer's disease (AD) affect individuals in their most productive years and represent a major source of disability. As disease-modifying clinical treatment trials emerge for specific pathologies, it will be necessary to 1) improve differential diagnosis of young-onset dementias and 2) develop sensitive and specific clinical, imaging and biofluid biomarkers that can be collected easily and reliably in developed and developing countries. This 2-year planning and development proposal seeks to facilitate international collaborative efforts in young-onset dementia (YOD) by establishing a sustainable clinical research collaboration between the Memory Clinic at the Institute on Aging, Pontificia Universidad Javeriana in Bogota, Colombia (MCIA) and the University of Pennsylvania's Frontotemporal Degeneration Center (PFTDC). Taking FTD spectrum dementias as a model, we will help MCIA build research capacity by developing and implementing standardized methods of clinical assessment, imaging and genetics, as well as data handling, analysis and transfer. This partnership aims to create the critical infrastructure necessary for successful collaborative research between MCIA and other Latino dementia centers in the US and abroad. The initial phase of this collaboration will include an assessment of both the needs and barriers to YOD research and services in Colombia. Concurrent with the needs assessment phase, we will 1) translate and adapt standardized clinical instruments, 2) establish a centralized image and biofluids repository, 3) harmonize imaging acquisition and processing methods and 4) take advantage of advanced and cost- effective genetic screening panels developed at U Penn to process DNA samples of familial and sporadic YOD cases in Colombia. Throughout the funding period, we will offer training through exchange visits, virtual meetings, translation of PFTDC educational materials and open symposiums for Colombian researchers and clinicians. Replication and extension of PFTDC findings with MCIA will demonstrate capacity building and provide preliminary data for follow-up studies examining genetically-derived biomarkers, social cognition and brain-behavior imaging correlations in a cross-cultural, Latino-English context. We hope this partnership will contribute to the diagnosis and management of YOD in Colombia and provide a framework to study these disorders in Spanish-speaking populations in the US and Latin America.
This proposal seeks to facilitate international collaborative studies in young-onset dementia (YOD) by establishing a sustainable clinical research collaboration between the Memory Clinic at the Pontificia Universidad Javeriana in Colombia (MCIA) and the University of Pennsylvania's Frontotemporal Degeneration Center (PFTDC). We will help MCIA build research capacity by developing and implementing standardized methods of clinical assessment, imaging, genetics, and data handling, analysis and transfer. This partnership will contribute to the diagnosis and management of YOD in Colombia and Latin America.
|Besser, Lilah; Kukull, Walter; Knopman, David S et al. (2018) Version 3 of the National Alzheimer's Coordinating Center's Uniform Data Set. Alzheimer Dis Assoc Disord 32:351-358|