How to Access CMI-HBN Data

It is our goal to provide researchers with the greatest flexibility to carry out scientific inquiries using the HBN data. In this regard:

  • We do not require authorship on any manuscripts generated using HBN data; citation as a data-source is sufficient.
  • We do not require review of manuscripts generated using HBN datasets; though we do strongly encourage careful documentation of any selection criteria applied to the HBN in choosing datasets for your analysis.
  • We do not require specification of planned data analyses prior to data access.

Protection of participant privacy is our first and primary concern.

Given the high dimensionality and personal nature of the data included (e.g., psychiatric assessments), we have developed two release versions:

1. HBN Neuroimaging Data Release:

  • Contains imaging data, physiological data acquired during scan acquisition (cardiac and respiratory), and limited phenotyping (age, sex, and handedness).
  • No psychiatric, cognitive, or behavioral information is included.
  • Immediately available to users (does not require a data usage agreement)

2. HBN Full Phenotypic Release:

  • Contains data for the high-dimensional phenotypic protocol. (See the Assessments Page for more information, or contact Bonhwang Koo)

    • DSM-V based psychiatric diagnostic assessment.
    • Dimensional psychiatric and behavioral assessment questionnaires (item-level responses included).
    • Neuropsychological testing.
    • Cognitive/behavioral performance measures.
    • Physical measures.
  • Data Usage agreement is required.

    • Expected completion time: < 5 minutes.
    • Signature and notarization by appropriate institutional representative is required.

Data Storage and Participant Privacy

Before entry into the HBN Biobank, all data are de-identified. Specifically, this process requires the removal of any and all personal identifiers specified by the Health Information in Accordance with the Health Insurance Portability and Accountability Act (HIPAA). During the consent process, all participants provide informed consent for their data to be openly shared following this de-identification process. Data sharing occurs through the 1000 Functional Connectomes Project and its International Neuroimaging Data-sharing Initiative (FCP/INDI)(Mennes et al. 2013).

Electronic Data. Electronic data is collected via NextGen. NextGen provides the infrastructure for both the collection of applicable phenotypic assessments and the participant portal. All data collected electronically is stricken of any participant protected health information (PHI). Participants are given a random unique identifier, generated directly from the electronic data capture system or the Global Unique Identified (GUID) Tool at the start of participation. The GUID Tool is a customized software application that generates a Global Unique Identifier for each study participant. The GUID is made up of random alpha-numeric characters and is NOT generated from PHI. As such, it has been approved by the NIH Office of General Counsel. All data are labeled with this unique identifier. Applicable participants receive a unique login and password to enter on the Healthy Brain Networks participant portal that serves as a secure, HIPAA-compliant, easy way for participants, and parents of participants, to complete relevant study measures assessments that are not collected during the face-to-face session. The Participant Portal is equipped with a variety of security features, including 128-bit encryption, firewall, anti-virus software, and intrusion detection software. Messaging features are also secure. All electronic data collected as part of the HBN initiative is kept on password- protected computers. Only approved researchers will be granted with logins for electronic data entry, review, and processing.

Paper Records. Paper records, including consent, assent, and HIPAA forms, and paper-CRFs are kept in participant files in locked file cabinets. These materials are additional kept behind locked doors. Participant data collected via paper-CRFs will not contain any participant PHI. These data forms will be de-identified and contain only the participant’s unique identifier. Additionally, data collected via paper are inputted into the electronic data system. Therefore all participant data are contained within a single, secure, electronic system to facilitate data sharing efforts of the project.

Participant Privacy. Confidentiality was a paramount consideration in planning data-sharing requirements. Protecting participant privacy while also providing access to extensively revealing data was a goal. All imaging data are fully anonymized in compliance with HIPAA by removing any potential protected health information identifiers, including identifying facial features from anatomical images, and randomizing the timing of release. It is important to note that data users must be aware of the possible negative impact of defacing on some analysis toolkits (e.g., FreeSurfer), and exercise additional care when producing such images and/or sharing pre-processed surfaces.