Improving data availability for brain image biobanking in healthy subjects: Practice-based suggestions from an international multidisciplinary working group

• Published in: NeuroImage (Orlando, Fla.) Vol. 153; pp. 399 - 409
• Main Authors: Shenkin, Susan D., Pernet, Cyril, Nichols, Thomas E., Poline, Jean-Baptiste, Matthews, Paul M., van der Lugt, Aad, Mackay, Clare, Lanyon, Linda, Mazoyer, Bernard, Boardman, James P., Thompson, Paul M., Fox, Nick, Marcus, Daniel S., Sheikh, Aziz, Cox, Simon R., Anblagan, Devasuda, Job, Dominic E., Dickie, David Alexander, Rodriguez, David, Wardlaw, Joanna M.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.06.2017; Elsevier Limited; Elsevier
• Subjects: Alzheimer's disease; Availability; Brain; Brain image biobank; Brain research; Cognitive science; Consents; Consortia; Data retrieval; Data sharing; Data storage; Database Management Systems; Databases, Factual; Dementia; Diseases; Ethical standards; Ethics; Functional anatomy; Humans; Information Dissemination - methods; Information sharing; Information Storage and Retrieval; Initiatives; Medical imaging; Medicin och hälsovetenskap; Multidisciplinary; Neuroimaging; Neurology; Neuroscience; Open access; Population; Provenance; Reuse; Scientists; Security; Statistics; Structure-function relationships; Training; Vision; Neuroimaging; Data sharing; Brain image biobank
• ISSN: 1053-8119; 1095-9572; 1095-9572
• DOI: 10.1016/j.neuroimage.2017.02.030

Brain imaging is now ubiquitous in clinical practice and research. The case for bringing together large amounts of image data from well-characterised healthy subjects and those with a range of common brain diseases across the life course is now compelling. This report follows a meeting of international experts from multiple disciplines, all interested in brain image biobanking. The meeting included neuroimaging experts (clinical and non-clinical), computer scientists, epidemiologists, clinicians, ethicists, and lawyers involved in creating brain image banks. The meeting followed a structured format to discuss current and emerging brain image banks; applications such as atlases; conceptual and statistical problems (e.g. defining ‘normality’); legal, ethical and technological issues (e.g. consents, potential for data linkage, data security, harmonisation, data storage and enabling of research data sharing). We summarise the lessons learned from the experiences of a wide range of individual image banks, and provide practical recommendations to enhance creation, use and reuse of neuroimaging data. Our aim is to maximise the benefit of the image data, provided voluntarily by research participants and funded by many organisations, for human health. Our ultimate vision is of a federated network of brain image biobanks accessible for large studies of brain structure and function. •Brain image biobanking with associated clinical data is increasingly common.•We provide recommendations following an interdisciplinary meeting of experts.•We discuss multidisciplinary issues relating to data collection and heterogeneity.•We discuss issues regarding databank infrastructure and management.•We suggest how to enhance the use and reuse of neuroimaging and clinical data.