A platform for discovery: The University of Pennsylvania Integrated Neurodegenerative Disease Biobank

Abstract

Neurodegenerative diseases (NDs) are defined by the accumulation of abnormal protein deposits in the central nervous system (CNS), and only neuropathological examination enables a definitive diagnosis. Brain banks and their associated scientific programs have shaped the actual knowledge of NDs, identifying and characterizing the CNS deposits that define new diseases, formulating staging schemes, and establishing correlations between neuropathological changes and clinical features. However, brain banks have evolved to accommodate the banking of biofluids as well as DNA and RNA samples. Moreover, the value of biobanks is greatly enhanced if they link all the multidimensional clinical and laboratory information of each case, which is accomplished, optimally, using systematic and standardized operating procedures, and in the framework of multidisciplinary teams with the support of a flexible and user-friendly database system that facilitates the sharing of information of all the teams in the network. We describe a biobanking system that is a platform for discovery research at the Center for Neurodegenerative Disease Research at the University of Pennsylvania.

Keywords: Alzheimer's Disease; Autopsy; Cerebrospinal fluid; Dementia; Frontotemporal lobar degeneration; Genetics; Neurodegeneration; Parkinson's Disease; Plasma; Serum.

Fig. 1

Description of clinical, data, and sample integration in the Neuropathology, Biomarker, and Genetics Biobank. UPenn, University of Pennsylvania; PMC, Penn Memory Center; FTDC, Frontotemporal Dementia Center; PD&MDC, Parkinson’s Disease and Movement Disorder Clinic; ALSC, Amyotrophic Lateral Sclerosis Center.