PAIN Repository Newsletter Issue 1.1

Issue 1.1 — Spring 2014
	In This Issue A Message from Emeran A. Mayer – Chair, Executive Committee Repository FAQ Recent Media Coverage Current Data Recent Publications

A Message from Emeran A. Mayer – Chair, Executive Committee

Welcome to the first issue of the PAIN Repository Newsletter.

We are excited to announce that the NIH funded PAIN Repository is now fully functional and ready to accept scans from PAIN Members that have registered.

Both the Archived (older and/or non standardized scans) and the Standardized Repository (for prospective, standardized scans) are fully operational. Our group has already uploaded 254 scans into the Archived, and 20 scans into the Standardized Repository. Several members are in the process of doing the same. We hope that many of the already committed members will soon follow this example.

In the following FAQ, I wanted to address several important questions that have come up from participating members, in particular as it relates to the Standardized Repository. I hope you will find the answers below helpful and that they will help to allay any concerns regarding uploading of scans from data sets that you have not yet published.

Over the next few weeks we will contact all of you individually to encourage you to use the standardized acquisition parameters and start uploading your scans. For any prospective new members I hope this information will also be useful and I encourage you to explore our website at painrepository.org for detailed information on the PAIN repository and how you can become involved.

PAIN Repository FAQ

Why should I contribute my (unpublished) scans to the Standardized Repository?

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:

	Begin acquiring your structural, DTI and resting state scans and the minimal set of questionnaires using the Standardized Repository guidelines so that these data will be eligible for inclusion in the Repository. These guidelines are provided in the PAIN Manual on our website (painrepository.org) As soon as possible upload to the repository a portion of your scans from ongoing studies that use these standardized parameters. By only uploading a portion of your study scans (you only have to upload a minimum of 20 scans per year), you will still be able to analyze and publish your own dataset without any interference from your PAIN participation, and at the same time contribute to the growing multisite data set which will become the basis for larger PAIN analyses. 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: http://privacyruleandresearch.nih.gov/pr_08.asp http://privacyruleandresearch.nih.gov/research_repositories.asp 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	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.


Recent Media Coverage

The Collective Good: Pooling Data to Boost Brain Imaging Research Two new resources enable collaboration reported on February 6, 2014 Database of Brain Images for Chronic Pain Voice of America reported Nov. 6 that the Gail and Gerald Oppenheimer Family Center for Neurobiology of Stress will serve as the main hub for a first-ever international database of brain images and other clinical information associated with chronic pain conditions. Dr. Emeran Mayer, professor of medicine in the division of digestive diseases, physiology and psychiatry and executive director of the Gail and Gerald Oppenheimer Family Center for Neurobiology of Stress and Dr. Kirsten Tillisch, associate professor of medicine in the division of digestive diseases at the David Geffen School of Medicine at UCLA, were interviewed. UCLA Database to House Brain Scans, Other Data for Chronic Pain Research UCLA database to house brain scans, other data for chronic pain research reported on Oct. 30, 2013 on American Pain Society Smart Brief Read MoreRead Less

Current Data

Our growing body of data contains structural and functional brain scans from patients with chronic pain conditions and healthy controls contributed by members and available for analysis.In addition, the PAIN Standardized Repository also offers clinical, psychosocial and behavioral data. The Executive Committee evaluates all requests for data, and encourages collaborations among multiple researchers and institutions.
Standardized Repository Number of Structural Scans: 20 Number of Resting State Scans: 20 Number of DTI Scans: 20 Go to List of Scans (Member login required)
Archived Repository Number of Structural Scans: 304 Number of Resting State Scans: 64 Go to List of Scans (Member login required)

Recent Publications

We would like to highlight a recent brain imaging study which demonstrates the feasibility and power of multisite neuroimaging study approaches. In the first study of its kind, CNS researcher Lisa Kilpatrick, PhD along with a team of scientists from UCLA and other prominent universities, report specific changes in activity in the resting brain of women with chronic urological pelvic pain.
	Sensory motor regions shown in red displayed altered activity and altered connectivity with the regions in yellow.
The US wide study compared 82 carefully screened patients with 85 matched healthy controls was performed as part of the National Institutes of Health Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network for which the CNS is the lead Neuroimaging site. Scans from 6 sites acquired on 4 scanner models using a standardized acquisition protocol were combined for analysis. Findings from the study clearly show altered intrinsic brain activity in the patient group in areas involved in sensation and control of pelvic muscles. Abnormal pelvic floor muscle activity is thought to play a key role in generating pelvic pain symptoms and the newly reported findings point to brain changes that may be involved in the maintenance and/or exacerbations of these symptoms. Other findings from the study indicated that alterations in the brain may separate patients with primarily chronic pain from those with bladder specific symptoms (such as increased pain with filling) and follow up research may therefore help individualize treatment for specific types of pelvic pain. This is the first of several multisite brain image analyses and publications from this consortium, evaluating group differences for grey matter, white matter and resting state data, analyzing subsets based on symptoms, sex and disease category. It demonstrates the power of being able to analyze large, standardized datasets with the ultimate goal of identify fingerprints of chronic pain disorders. For more info see http://www.ncbi.nlm.nih.gov/pubmed/24681331 Read MoreRead Less
The Oppenheimer Center for Neurobiology of Stress at UCLA CHS 42-210 MC737818 10833 Le Conte Avenue Los Angeles, CA 90095-7378 Phone: (310) 206-0192 info@painrepository.org .

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PAIN Repository Newsletter Issue 1.1