The “Big Data for Advancing Dementia Research” project is will looking at four case studies to evaluate current (best) practices in data sharing and draw policy recommendations. These four case studies represent a mixture of both international and national efforts, as well as dementia-specific and cross-conditional data repositories, and thereby represent of a good range of existing efforts:
ADNI (Alzheimer’s Disease Neuroimaging Initiative) was established in 2004 to better predict and monitor Alzheimer’s Disease (AD) onset and progression, establish global standards to measure cognitive changes, and share data across the international research community. North American ADNI includes imaging, genetic, and clinical data from nearly 2,500 research participants, with various other countries having established spin-off initiatives.
AddNeuroMed was a European initiative started in 2005 that followed a relatively traditional scientific research model, initially planning to use the dataset only within the collaboration, but sharing it more broadly later in response to specific requests. Deep data on 700 patients were collected, mostly used by European researchers.
UK Biobank is a massive initiative to collect longitudinal data on 500,000 UK volunteers that combines research data with routine data from electronic medical records. After the initial data collection between 2006–2010, the data were recently made available to researchers. UK Biobank not only relates to dementia, but also to a variety of conditions as participants develop diseases over the course of the 25+ year data collection.
The Swedish Brain Power network ties together a variety of national longitudinal population-based health studies that take advantage of Sweden’s remarkably complete and traceable health information, which is connected using a unique and widely used identification number for all residents. Sweden is a particularly interesting source of well-linked data (Axelsson & Schroeder, 2009).
Additional information was obtained from the initiatives’ websites and previous research, as well as discussions at OECD workshops in Toronto (September 2014) and Paris (December2014), where interim findings of this research were presented. Insights were also gained from discussions with leading experts in consent, research ethics, health research, genomic research, legal issues, and related areas.