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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 Cognitive Function and Ageing Studies (CFAS) are population based studies of individuals aged 65 years and over living in the community, including institutions, which is the only large multi-centred population-based study in the UK that has reached sufficient maturity. There are three main studies within the CFAS group. MRC CFAS, the original study began in 1989, with three of its sites providing a parent subset for the comparison two decades later with CFAS II (2008 onwards). Subsequently another CFAS study, CFAS Wales began in 2011.
All ADNI data are shared without embargo through the LONI Image and Data Archive (IDA), a secure research data repository. Interested scientists may obtain access to ADNI imaging, clinical, genomic, and biomarker data for the purposes of scientific investigation, teaching, or planning clinical research studies. "The Alzheimer’s Disease Neuroimaging Initiative (ADNI) unites researchers with study data as they work to define the progression of Alzheimer’s disease (AD). ADNI researchers collect, validate and utilize data, including MRI and PET images, genetics, cognitive tests, CSF and blood biomarkers as predictors of the disease. Study resources and data from the North American ADNI study are available through this website, including Alzheimer’s disease patients, mild cognitive impairment subjects, and elderly controls. "