BIRN Map

BIRN Map

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Human Subject Data

Confidentiality of patient data is a crucial element of any medical research project that plans to share such data. In brief, there are Federal regulations and guidelines (i.e., HIPAA, Common Rule, IRB regulations) that set limits on the types of human subjects' data that can be shared in a research project and the necessary approvals to do so. The BIRN policies being crafted reflect a balance between guarding patient confidentiality and achieving research results that will be beneficial to the scientific and medical community.

BIRN data and other material provided are to be used solely for analysis and research, not for investigation of specific individuals or organizations. BIRN requires all users to give "assurance that such uses of data will conform to widely accepted standards of practice and legal restrictions that are intended to protect the confidentiality of research subjects." All human data contained in the BIRN archives must be examined to ensure that the contents of the collection do not violate explicit or implicit pledges of confidentiality given to respondents or research subjects.

De-identification of BIRN Data

BIRN test beds have been developing a user-friendly tool that takes a local site's raw structural data and de-identifies it in compliance with HIPAA and IRB regulations.

mri-deidentThe image to the left is an example of a de-identification process. Surface representations of a head generated from a structural MRI scan on the original raw data (left) and from the resulting processed data after running Bruce Fischl's (MGH CFNT) face de-identification code. The software ensures that facial features are automatically removed while keeping brain tissue untouched. The code is integrated for visualization with 3D Slicer (BWH SPL) and with the rest of the SRB upload tools (Duke, UCSD).

More Information About Human Subject Data Regulations