July 2016 Update
The TRTC work group, led by Chair Peter Nigrovic, MD, has been working hard on several fronts since the Scientific Meeting.
The CARRA Biorepository RFP will be going out to all TRTC members, CARRA Registry PIs, and commercial biobank vendors. The goal is to establish a centralized biorepository that will ship kits, store biosamples, handle biosample shipping requests and overall management of the CARRA biosample inventory associated with the registry. The RFP will be sent out in the next few weeks. If you are a CARRA Registry PI, please consider sharing it with your site’s lab director in case they may be interested in responding to the RFP.
The TRTC work group has finalized the manual of operations for the biosample collection for STOP-JIA (polyarticular JIA CTP) project and CARRA is currently contracting with Toronto Sick Kids and Cincinnati as the biorepositories for STOP. Once the contracts are in place, notifications will be sent to sites who have IRB approval for biosample collection. So far 26 sites have approval for biosample collection, 35 sites are pending and 2 sites will not be participating in biosample collection.
Biosample collection for FROST (systemic JIA CTP). The TRTC work group has been meeting to discuss the biosample collection needs and logistics for the FROST study. Funding has been provided separately from the sJIA Foundation to support biosample collection from patients who consent at baseline and 6 months follow-up. Work continues on finalizing this plan and more information will be available in the coming months.
Data/Sample Request Portal. The portal has gone through several iterations and is now entering final testing to ensure the content and functionality is acceptable. The goal is to have a web portal where members of CARRA can go to enter a request for data or biosamples. The request will then route to a review team for approval and then, if/when approved, the data or biosamples will be provided to the requestor. This web-enabled version will be much more efficient than the current clunky email process we had been using. The portal will be finalized in the next month or so. Stay tuned for more info on the roll-out of this exciting tool.