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

NeuroImage | 2017

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.

Pubmed ID: 28232121 RIS Download

Associated grants

  • Agency: NIBIB NIH HHS, United States
    Id: P41 EB015922
  • Agency: NIA NIH HHS, United States
    Id: RF1 AG041915
  • Agency: Medical Research Council, United Kingdom
    Id: MR/N003403/1
  • Agency: Medical Research Council, United Kingdom
    Id: G0701127
  • Agency: Wellcome Trust, United Kingdom
  • Agency: Medical Research Council, United Kingdom
    Id: MR/M009106/1
  • Agency: Medical Research Council, United Kingdom
    Id: G9409634
  • Agency: Medical Research Council, United Kingdom
    Id: G0701120
  • Agency: Medical Research Council, United Kingdom
    Id: MR/K026992/1
  • Agency: Medical Research Council, United Kingdom
    Id: MC_PC_17114
  • Agency: NIBIB NIH HHS, United States
    Id: U54 EB020403
  • Agency: Medical Research Council, United Kingdom
    Id: MR/M024903/1
  • Agency: Wellcome Trust, United Kingdom
    Id: 100309/Z/12/Z

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This is a list of tools and resources that we have found mentioned in this publication.


Mind Research Network - COINS (tool)

RRID:SCR_000805

A web-based neuroimaging and neuropsychology software suite that offers versatile, automatable data upload/import/entry options, rapid and secure sharing of data among PIs, querying and export all data, real-time reporting, and HIPAA and IRB compliant study-management tools suitable to large institutions as well as smaller scale neuroscience and neuropsychology researchers. COINS manages over over 400 studies, more than 265,000 clinical neuropsychological assessments, and 26,000 MRI, EEG, and MEG scan sessions collected from 18,000 participants at over ten institutions on topics related to the brain and behavior. As neuroimaging research continues to grow, dynamic neuroinformatics systems are necessary to store, retrieve, mine and share the massive amounts of data. The Collaborative Informatics and Neuroimaging Suite (COINS) has been created to facilitate communication and cultivate a data community. This tool suite offers versatile data upload/import/entry options, rapid and secure sharing of data among PIs, querying of data types and assessments, real-time reporting, and study-management tools suitable to large institutions as well as smaller scale researchers. It manages studies and their data at the Mind Research Network, the Nathan Kline Institute, University of Colorado Boulder, the Olin Neuropsychiatry Research Center (at) Hartford Hospital, and others. COINS is dynamic and evolves as the neuroimaging field grows. COINS consists of the following collaboration-centric tools: * Subject and Study Management: MICIS (Medical Imaging Computer Information System) is a centralized PostgreSQL-based web application that implements best practices for participant enrollment and management. Research site administrators can easily create and manage studies, as well as generate reports useful for reporting to funding agencies. * Scan Data Collection: An automated DICOM receiver collects, archives, and imports imaging data into the file system and COINS, requiring no user intervention. The database also offers scan annotation and behavioral data management, radiology review event reports, and scan time billing. * Assessment Data Collection: Clinical data gathered from interviews, questionnaires, and neuropsychological tests are entered into COINS through the web application called Assessment Manager (ASMT). ASMT's intuitive design allows users to start data collection with little or no training. ASMT offers several options for data collection/entry: dual data entry, for paper assessments, the Participant Portal, an online tool that allows subjects to fill out questionnaires, and Tablet entry, an offline data entry tool. * Data Sharing: De-identified neuroimaging datasets with associated clinical-data, cognitive-data, and associated meta-data are available through the COINS Data Exchange tool. The Data Exchange is an interface that allows investigators to request and share data. It also tracks data requests and keeps an inventory of data that has already been shared between users. Once requests for data have been approved, investigators can download the data directly from COINS.

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NIDB - Neuroinformatics Database (tool)

RRID:SCR_002488

Neuroimaging database designed to allow simple importing, searching, and sharing of imaging data. NIDB also provides automated pipelining with importing of results back into NIDB which can be searched along with imaging meta data.

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NCBI database of Genotypes and Phenotypes (dbGap) (tool)

RRID:SCR_002709

Database developed to archive and distribute clinical data and results from studies that have investigated interaction of genotype and phenotype in humans. Database to archive and distribute results of studies including genome-wide association studies, medical sequencing, molecular diagnostic assays, and association between genotype and non-clinical traits.

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XNAT - The Extensible Neuroimaging Archive Toolkit (tool)

RRID:SCR_003048

Software platform designed to facilitate common management and productivity tasks for neuroimaging and associated data.

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DataLad (tool)

RRID:SCR_003931

Project to adapt model of open source software distributions to address technical limitations of data sharing and develop all components of data distribution. Builds on top of git-annex and extends it with intuitive command line interface. Enables users to operate on data using familiar concepts, such as files and directories, while transparently managing data access and authorization with underlying hosting providers. Can create DataLad datasets using any data files published on the web.

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UK Biobank (tool)

RRID:SCR_012815

Biobank provides data collected at Assessment Center and via online questionnaires on participants aged 40-69 years recruited throughout United Kingdom and provides summary information to improve prevention, diagnosis and treatment of serious and life threatening illnesses.

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EQUATOR Network (tool)

RRID:SCR_012861

The EQUATOR Network is an international initiative that seeks to enhance reliability and value of medical research literature by promoting transparent and accurate reporting of research studies. This goal will be achieved through: raising awareness of the crucial importance of good reporting of research becoming the recognised global centre providing resources, education and training relating to the reporting of health research and use of reporting guidelines assisting in the development, dissemination and implementation of reporting guidelines monitoring the status of the quality of reporting across health research literature conducting research relating to the quality of reporting The EQUATOR Network Resource Centre provides up-to-date resources related to health research reporting mainly for: authors of research articles journal editors and peer reviewers reporting guideline developers Other users that benefit from the knowledge of principles of good research reporting include representatives of research funders, research ethics committee members, individuals and organisations involved in research education. The resources on our website are regularly updated (see the date of the last update at the foot of each page). Sponsor. Core programme funding for 2007 - 2013 NHS National Library for Health NHS National Institute for Health Research NHS National Knowledge Service UK Medical Research Council Canadian Institutes of Health Research Scottish Chief Scientist Office Pan American Health Organization

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Neuroimaging Data Model (tool)

RRID:SCR_013667

Collection of specification documents that define extensions the the W3C PROV standard for the domain of human brain mapping. NIDM uses provenance information as a means to link components from different stages of the scientific research process from dataset descriptors and computational workflow, to derived data and publication.

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Brain Imaging Data Structure (BIDs) (tool)

RRID:SCR_016124

Standard specification for organizing and describing outputs of neuroimaging experiments. Used to organize and describe neuroimaging and behavioral data by neuroscientific community as standard to organize and share data. BIDS prescribes file naming conventions and folder structure to store data in set of already existing file formats. Provides standardized templates to store associated metadata in form of Javascript Object Notation (JSON) and tab-separated value (TSV) files. Facilitates data sharing, metadata querying, and enables automatic data analysis pipelines. System to curate, aggregate, and annotate neuroimaging databases. Intended for magnetic resonance imaging data, magnetoencephalography data, electroencephalography data, and intracranial encephalography data.

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NeuroVault (tool)

RRID:SCR_003806

Data repository where researchers can publicly store and share unthresholded statistical brain activation maps produced by MRI and PET studies.

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BRAINS Imagebank (tool)

RRID:SCR_014576

A searchable collection of anonymised images and associated clinical data. It includes normal individuals at all ages (from prenatal to old age). The image bank contains integrated data sets already collected as part of research studies which include control subjects. New data is added as they become available.

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