Spring 2015

Although it is the time for the summer doldrums, the CARRA Executive team and Steering Committee have been keeping lots of balls in the air; however, the biggest news may be that the CARRA Registry is active with the first patients enrolled to meet the July 1 milestone (thanks, Egla!) and the first sites to use IRBrely have signed agreements and Duke IRB approval (UWisconsin and Vanderbilt)! See other updates in the CARRA Registry section but we are back in business!

The 2015-2016 Steering Committee is holding its first meetings and while we are excited about the new members, we are sorry to be losing Chuck Spencer, Emily von Scheven, and Ann Eberhard. Due to Chuck’s enthusiasm and efforts, the CARRA meeting was expanded to include the fellows meeting which had previously been hosted by the AAP. I think the CARRA Annual Meeting is a great home for this conference and we will continue to provide support for this activity. Thank you also to Chuck, who with Suzanne Li, chaired our most ambitious and successful annual meeting to date. I look forward to working with Chuck on additional CARRA activities, such as development of the ethics and conflict of interest committees which he continues to work with moving forward. Emily has been a fixture on the SC, leading the disparate SLE committee for the last 6 years with Ann as vice chair. As a result of their leadership, the SLE group has become active and productive with multiple workgroups and collaborations outside of CARRA, particularly with pediatric dermatology and nephrology. Emily has agreed to represent CARRA on the Joint Steering

Committee with the Arthritis Foundation to help manage this partnership moving forward. Thank you all for your strong work and dedication to CARRA. You have made tangible contributions that have strengthened our organization during a time of major changes and are meaningful as we move forward.

We have successfully developed and voted almost unanimously to accept our new mission and vision. This was developed using processes led by Mark Haas as outlined at the CARRA meeting in Austin. We are now working on further development of a strategic plan and budget in sync with the mission and vision which will also be available for comment before formal acceptance by the SC and Board of Directors.

These documents help us focus our efforts on CARRA wide priorities while also serving as tool to foster effective communication with our membership and external partners. Thank you to everyone who took the time to vote and provide comments. We appreciate the feedback.

The Conflict of Interest policy will be available soon, thanks to extensive work on this by a committee led by Christy Sandborg, including Rob Fuhlbrigge, Chuck Spencer, Norm Ilowite, Peter Nigrovic, and Suzanne Li. They have consulted with non-profit lawyers and other organizations as well as the Board of Directors and Steering Committee. Look for this policy to be circulated for discussion in the next few months prior to acceptance and full implementation. The executive team and BOD are already following tenets of the proposed policy.

Another major work in progress is establishment of the CARRA External Advisory Committee (EAC) which will report to the Steering Committee. These efforts are being ably led by Peter Blier and we are planning for the first meeting of the EAC at the ACR. Details about the EAC charter and membership will be available once finalized.

In other news, CureJM has awarded grants to two members and a new RFA is out for additional funding opportunities. Yuki Kimura, Sarah Ringold, and Pam Weiss were awarded a grant from PCORI to use the Registry to study the comparative effectiveness of the CARRA polyarticular CTPs and pilot online consenting and electronic (APP based) collection of PROs. Congratulations to these awardees.

Hope everyone is enjoying the hot summer. Look forward to seeing you at ACR in November.

Laura Schanberg, MD