Confidentiality Practices

The Columbia MR Research Center ensures confidentiality for research participants.  Access to information collected will be limited to research staff. Subjects' names will not be used, but a code number will be associated with their information. Numeric codes will be assigned to all data. Thus, all data will be de-identified and the link to the identifiers will only exist in a password-protected spreadsheet available only to the study investigators and kept on a secure, password-protected computer.

Behavioral, physiological, and MRI data as well as demographic and questionnaire information that has been electronically entered will be kept on password-protected computer systems that can only be accessed by investigators. All data is numerically coded at time of electronic capture such that electronic storage does not include any personally identifiable information.

Data storage software varies between sites. Check details with the director or administrator.

Columbia University MRI Center at the Neurological Institute

TBD

New York State Psychiatric Institute

NYSPI MRI Research Program Data Access Policy

All imaging data acquired by the NYSPI MRI Research Program will have no identifying information or Protected Health Information (PHI) resident in the image header(s). At no point may an Investigator request that images be acquired or created with PHI or other identifying information resident in the scan data. All subjects must have a pre-assigned ID for the scan session that may not use any permutation or derivation of the subject’s Protected Health Information, including names, initials, dates of birth, or any other information designated as key identifiers/PHI by the United States Department of Health and Human Services.

Distribution of Images

All images acquired by NYSPI MRI under a signed IRB consent form for a specific protocol are the property of the primary Principal Investigator as listed on the IRB Protocol. After each scan session for a specific protocol, the image data will be transferred to the XNAT neuroimaging database via encrypted transmission, and hosted on a secure server at NYSPI. The image data may only be distributed directly to the XNAT project on the account of the Principal Investigator as named in the IRB protocol for the specific scan session.

There are no exceptions to this policy. An investigator may, at his or her discretion, freely request data access in writing for whomever they wish. NYSPI MRI will facilitate and grant access to a study's imaging data only with written approval from the primary PI for the study. XNAT user accounts may be created for all Principal Investigators as well as their collaborators; however we will only transmit data directly to the corresponding XNAT project tied to the Principal Investigator’s account for the specific scan session

Test Data

Any data acquired for quality control or testing purposes and not specifically designated as pilot data for an IRB protocol must be made freely available to any other researchers who would like to use it for evaluating processing methods, etc., unless a special exemption is granted in writing by the current director of the MRI Research Program. Test data acquired in this manner may not be used as part of a published study.

Data Retention 

The MRI Scanning Console has a limited amount of storage space for images and console performance is greatly affected by the number of images in the console database, therefore we are able to retain exams and their respective images for a maximum of two weeks, after which point the exams will be cleared from the console to create additional space. We ask that all groups check their exam status on XNAT for any missing data or file(s) and notify us within this two week period following any scanning session so that we can make every effort to recover any missing data.

Additionally, certain scan types (MRS, for example) generate additional P-Files that are transferred to a secondary server following a scan session. Groups are asked to verify this secondary transfer following their scan session as well as retrieve these files as soon as possible. Missing P-files have a limited window of recovery due to their temporary status on the console, so we ask that groups make every effort to check P-files within one week of a scan session. 

Zuckerman Mind Brain Behavior Institute

All MRI data collected at ZMBBI is stored on a system called Flywheel. Flywheel's system is an API architecture that handles all data going in and out of the platform through a single, secure, permissions-based model. Data is encrypted while in transit using SSL certificate and can also be encrypted at rest. All data will reside behind Flywheel's firewall and will only be accessed by authorized users. CUIMC and NYSPI information pending.