Data sharing brain image

Data Sharing

Data Release Flier
Annual data releases for the HBCD Study cohort will contain data from the current enrolled sample and cumulative visits up to the time just before each data release. For more information about the visit timeline and assessment domains, please visit the For Scientists page and the Study Protocols page.

Click here for the HBCD Data Release Documents. Click here for FAQs.

New NIH Security Requirements for Controlled Access Data
NIH expects that Approved Users of NIH controlled-access data comply with NIH Security Best Practices for Users of Controlled-Access Data and maintain such data on institutional IT systems, cloud service providers, and/or third-party IT systems with security standards that meet or exceed NIST SP 800-171 or the equivalent ISO/IEC 27001/27002 standards. Please see this summary for detailed information as it pertains to the new NIH Brain Development Cohorts Data Sharing Platform.

This NIH webinar provides an overview of NIST security requirements: https://sharing.nih.gov/genomic-data-sharing-policy/resources/learning?policy=GDS. Note: the presenters refer to genomic data but the policy has since been amended to include all NIH controlled access data.

Data Releases
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HBCD Data Release now available via the new NIH Brain Development Cohorts Data Sharing Platform

Available Now! We are excited to announce the launch of the NIH Brain Development Cohorts (NBDC) Data Hub. This new data ecosystem will host and facilitate access to data from both the Adolescent Brain Cognitive DevelopmentSM (ABCD) Study and the HEALthy Brain and Child Development (HBCD) Study.

The NBDC Data Hub will offer a range of functionalities:

Scalable Data Integration: Seamlessly manage large volumes of data, including neuroimaging and genomics data

  • Customized Query Tools: Easily navigate data dictionaries to find the variables you need for your research goals
  • Streamlined Data Use Certification (DUC) Workflows: Choose individual or investigator-led group DUC. Visit the NBDC Data Hub to learn more and start your DUC application: https://www.nbdc-datahub.org/ . Researchers with an active DUC from the NIMH Data Archive will need to obtain a new DUC via the NBDC Data Hub.
  • Responsible Use Training: Complete training on responsible data and biospecimen use prior to data access approval

HBCD data users: The inaugural HBCD data release will include data from over 1400 pregnant participants during the prenatal period. For about half of these participants, follow-up data from their babies will also be included. For more information about the HBCD Study, please visit  https://hbcdstudy.org. Included in the inaugural release:

  • Data domains encompassing prenatal health, pregnancy exposures including substance use, social and environmental determinants of health, infant brain imaging and activity, cognition and behavior, physical growth, and wearable biosensors
  • Raw and derived brain imaging, EEG, and motion (actigraphy) data using the BIDS standard for data organization

ABCD data users: The ABCD 6.0 data release includes cumulative data from baseline through the six-year follow-up visit, with data from about 75% of participants at that timepoint. For detailed information about the ABCD Study®, please visit the ABCD Study website: https://abcdstudy.org. New with the 6.0 release:

  • All summary scores for tabulated data have been recomputed and a link to a companion R package will be provided on the ABCD documentation
  • Two new tables will be shared containing general participant information that may change over time (dynamic variables, e.g., cohort descriptions) as well as visit-specific information (static variables, e.g., visit date/time)
  • Neuroimaging:
    • Brain Imaging Data Structure (BIDS) – formatted raw data
    • Concatenated resting-state and task-based data
    • ABCD Community Collection (ABCC) BIDS derivatives data

Questions? Email: NBDC@mail.nih.gov

 

Data Opportunities
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Data Resources
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HBCD Special Issue Publications
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HBCD Study investigators have published papers that describe the study’s design and analysis plans, and that highlight methodological and statistical issues in HBCD.

An Overview of the HEALthy Brain and Child Development Study
Developmental Cognitive Neuroscience | An Overview of the HEALthy Brain and Child Development Study | ScienceDirect.com by Elsevier