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The Federal Interagency Traumatic Brain Injury Research (FITBIR) informatics system was developed to share data across the entire TBI research field and to facilitate collaboration between laboratories, as well as interconnectivity with other informatics platforms. Sharing data, methodologies, and associated tools, rather than summaries or interpretations of this information, can accelerate research progress by allowing re-analysis of data, as well as re-aggregation, integration, and rigorous comparison with other data, tools, and methods. This community-wide sharing requires common data definitions and standards, as well as comprehensive and coherent informatics approaches.
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The Penn Integrated Neurodegenerative Disease Database (INDD) contains data from individuals with Alzheimer's disease, Parkinson's disease, frontotemporal dementia, and amyotrophic lateral sclerosis, who have been followed in research studies at the University of Pennsylvania. The database has been periodically described in publications (https://pubmed.ncbi.nlm.nih.gov/23978324/), with updates on the website. Researchers can request biosamples as well as clinical and biomarker data. Scientists work collaboratively to analyze the Integrative Neurodegenerative Disease Database (INDD) from the Center for Neurodegenerative Disease Research (CNDR) that tracks ~11,000 patients who attended one of four neurodegenerative disease centers at Penn.
The Central Neuroimaging Data Archive (CNDA) allows for sharing of complex imaging data to investigators around the world, through a simple web portal. The CNDA is an imaging informatics platform that provides secure data management services for Washington University investigators, including source DICOM imaging data sharing to external investigators through a web portal, cnda.wustl.edu. The CNDA’s services include automated archiving of imaging studies from all of the University’s research scanners, automated quality control and image processing routines, and secure web-based access to acquired and post-processed data for data sharing, in compliance with NIH data sharing guidelines. The CNDA is currently accepting datasets only from Washington University affiliated investigators. Through this platform, the data is available for broad sharing with researchers both internal and external to Washington University.. The CNDA overlaps with data in oasis-brains.org https://www.re3data.org/repository/r3d100012182, but CNDA is a larger data set.
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An Open Science resource that promotes scientific research and discovery in neurological diseases and accelerates the development of new treatments. It includes a growing collection of biospecimens, longitudinal clinical and neuropsychiatric information, imaging and genetic data from patients with neurological disease as well as healthy controls.