| Q | Why should I contribute my (unpublished) scans to the Standardized Repository? |
| A | We fully understand the reluctance share data that is either newly collected or has not been completely analyzed and the concern that this may compromise your own future use of the data. On the other hand, the only way to rapidly build a large enough database of standardized images for members to use to examine questions not addressable in smaller individual data sets is if members start participating in the Standardized Repository ASAP. We therefore encourage you to:
Keep in mind that if all members contribute only 10 scans to the Standardized Repository during year 1, we will have a 150 standardized scans which members can use for proposed analyses by the end of 2014. In addition no one can take your uploaded scans and do an analysis by themselves. The ONLY way for a member to use uploaded scans for analysis (we anticipate this to happen in about a year) is by first submitting an analysis proposal to the Executive Committee, which will then made available for comments by all members. An analysis can only go forward if there is unanimous approval by the EC and no objections by any member. |
| Q | Do I need to get special IRB approval to contribute to the PAIN Repository? |
| A | In many cases, this will not be necessary as long as all imaging and meta data contributed contain no personal identifiers. However, you should consult with your IRB to find out if your site has specific requirements for sharing deidentified data. In the United States, the U.S. Department of Health and Human Services/National Institutes of Health stipulate that “Covered entities may use or disclose health information that is de-identified without restriction under the Privacy Rule.” U.S. sites, please refer to these pages for more information on privacy compliance:
For a complete list of personal identifiers, please refer to the PAIN User Manual’s Subject Confidentiality section. Upon request, the PAIN team will be happy to provide a copy of the UCLA IRB application and approval letter for the Repository to forward to your IRB for review. |
| Q | Is my data safe? |
| A | The PAIN Repository transfers all data via secure network protocols (https and sftp). Member permissions and provenance are maintained via user and group accounts and a relational database management system. Images are parsed and scanned to both extract scan specifications and ensure long-term file integrity. Algorithmic fingerprint “checksums” protect against digital deterioration (bitrot) by mathematically matching the stored image to the original. Data are stored on a dedicated system separate from user application servers. Only administrators and automated system processes (eg. backup) can access data outside of collaboratively-defined repository datasets. Servers run on NIST Common Criteria compliant Red Hat Enterprise Linux with NSA-developed role-based security (SELinux) enabled. Network security includes firewalls and private local area networks (LANs) with perimeter network (DMZ) access to web servers. |
| Q | Who will have access to my data? |
| A | No one will have direct access to download data from the PAIN servers. To obtain data, a Data Use Agreement that defines the data to be used, the hypotheses to be tested and the scope of the analysis must be completed and approved by the Executive Committee. While any member may request data from the Archived Repository, only contributing members of the Standardized Repository will be able to obtain data from the Standardized Repository. |
| Q | Where is the PAIN repository physically located? What kind of servers does it use? |
| A | The repository resides in a secure data center at the UCLA Center for Neurobiology of Stress. Servers are locked in rackmount cages for security and stability. A dedicated ventilation system provides appropriate cooling. All servers run Redhat Enterprise Linux (RHEL), configured for best-practices in data archiving and processing. Security Enhanced Linux (SELinux) provides an additional operating system security. Storage consists of redundant arrays of independent drives (RAID) in RAID-6 (replicated with parity) mode. |
| Q | How does the repository manage and integrate imaging data, quality assurance information and subject metadata? |
| A | The repository database employs an identity management system to ensure accurate linking of all data elements including images, metadata and QC values. A unique identifier will be generated for each scanning session and associated metadata uploaded. Data schemas will be provided for the collection and transfer of all metadata to ensure consistency and compatibility of all variables. These schemas specify variable names, data types, acceptable value ranges and item descriptions. Standardized QC variables will be used to provide information on the quality of every scan. This database structure will allow PAIN staff to efficiently respond to data queries and generate specific data sets. |
| Q | How should I acknowledge the PAIN Repository on publications, abstracts or inventions using PAIN Standardized or Archived data? |
| A | Please include an acknowledgement containing the following information, or some variation of it: “Data used in preparation of this article/manuscript/abstract were acquired from the Pain and Interoception Imaging Network – PAIN Repository (painrepository.org). PAIN Repository investigators may have provided data but not otherwise participated in the analysis or preparation of this report. The PAIN repository is funded by the National Institutes of Health (NIDA, NCCAM) under award number 1R01At007137.” |
| Q | Who can request PAIN Repository data? |
| A | Any investigator who contributed data to the PAIN Repository can request PAIN datasets. PAIN Standardized Repository members are eligible to request both Archived and Standardized Data. Contributors to the Archived repository can request Archived datasets. |
| Q | How do I request PAIN Repository datasets? |
| A | After contributing data to the PAIN Repository, an investigator can request Standardized datasets at https://www.painrepository.org/standardized/request-standardized-data/, or Archived datasets at https://www.painrepository.org/archived/request-archived-data/, depending on the type of membership they hold.
Data requests require an active membership and login. The Data Use Agreements for both Standardized and Archived data requests can be reviewed on the public section of the PAIN website at |
| Q | Who evaluates PAIN Repository data requests? |
| A | The PAIN Repository Executive Committee evaluates and approves all data requests proposals, checking for clear research aims and overlap with ongoing projects or other proposed analyses. |
| Q | How do I download PAIN datasets? |
| A | After the PAIN Repository EC approves your data request, you will receive a link to download the compressed data package(s), which consist of neuroimaging scans, demographics, methods (if available), and a dataset description. Standardized datasets also include available clinical and behavioral assessments associated with the data. |
Standardized Repository |
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| Q | Where do I find detailed acquisition parameters? |
| A | Please click on the links at http://painrepository.org/standardized/mri-protocols/ for detailed acquisition parameters. You must be logged in in order to view this page. |
| Q | How should I provide clinical and behavioral information to the repository? |
| A | For the Standardized Repository, please use the metadata spreadsheets to report information such as demographics, assessment scores, medical history, etc. Download the files from http://painrepository.org/standardized/contribute-data/#metadata. |
| Q | How do I obtain a site code? |
| A | After you have registered to become a member of the Standardized Pain Repository, contact the PAIN team to obtain a site code. The site code is a numeric sequence unique to your site which should be included on the subject ids of all your standardized subjects and file names. |
| Q | What is the appropriate format for the Standardized Repository subject IDs? |
| A | The Standardized repository subject ids should follow the format SSS_LNNNN, where SSS corresponds to the unique site code for your site followed by an underscore, L to a capital letter, and NNNN to four numbers. Here is an example: 012_A1234. Following this format will prevent duplicate ids in the Standardized Repository. |
| Q | What if my site gets a new scanner? My site will be upgrading to the Siemens Skyra. |
| A | The PAIN Repository will continue to test and publish protocols in collaboration with all sites to optimize compatibility across all scanner brands and models in use. If your site plans to upgrade to a newer model please contact the PAIN team to check for any changes in parameters and the procedures for rechecking image compatibility. |
| Q | Do I have to give out all the PAIN suggested questionnaires? What if we use other but equivalent measures? |
| A | This question only pertains to the Standardized Repository as all types imaging and metadata can be uploaded into the Archive Repository without any restrictions. However, in order to make the Standardized Repository as useful as possible, we would like to keep all questionnaires as standardized as possible. If for some reason, you cannot administer the recommended questionnaire, but have a questionnaire with equivalent content, please contact our PAIN Team to discuss how to best accomplish both the goals of the repository and your site specific needs. |
| Q | Can I use the new Multi-Band Accelerated Pulse Sequence for the Standardized Repository? |
| A |
The PAIN Repository will accept diffusion and resting state fMRI scans acquired using the new Multi-Band Accelerated Pulse Sequences developed by the Center for Magnetic Resonance Research at the University of Minnesota. However, currently, these sequences have been developed for the Siemens scanners only. These are available via a free license from UMN CMRR: https://www.cmrr.umn.edu/multiband. If you choose to use these new settings, please coordinate with the PAIN Team regarding the specific scanner, software version, and sequence used. The Repository will continue to accept scans based on the current standardized protocols. Due to the uncertainty regarding if and how these scans will be combinable with scans acquired using the standardized protocols, we encourage you to acquire scans using both sequences if possible. |