Fall 2015

Dear Colleagues,

2015 continues to bring lots of excitement and new activities for CARRA. As you know from our recent breaking news alert, the CARRA Registry signed its first industry contract with Novartis which gets the pharmacosurveillance program off the ground.

Depending on the timing of the newsletter, many of you may have either already gotten your contract and regulatory packets or will be getting them shortly. This is also the first step in long-term sustainability for the registry. See the registry update for more information from Yuki Kimura.

In addition, we signed a contract with the Arthritis Foundation as 2014 wrapped up and that collaboration is now moving forward following a gathering in Atlanta with our Board of Directors, Executive Committee, and AF leadership. It was really exciting to hear Ann Palmer (CEO) and Rick Willis (Senior VP Strategic Affairs) explain their vision of the CARRA collaboration, modelling it after the Cystic Foundation engagement with the clinical and research centers. With formation of the Joint Steering Committee consisting of 10 members (5 representing AF and 5 from CARRA) this month, joint activities will pick up steam. The CARRA representatives on the committee are Rob Fuhlbrigge, Yuki Kimura, Kelly Mieszkalski, Emily von Scheven and me. The AF representatives include Nora Singer, Rick, Sandra Mackey (Senior VP Marketing and Communications), Amanda Niskar (National Scientific Director), and Colleen Ryan (parent and AF volunteer in the Southern California region). This group is tasked with developing a charter for operations, determining how joint fundraising will work, and outlining the goals of the research collaboration. In addition, this group will decide on the exact amount of financial support the AF will provide to CARRA each year. Hopefully, this collaboration will help us fully vest the Registry, bringing in additional rheumatic diseases, as well as make it possible for us to fund research and develop projects to grow the researchers in our community. More to come on this in the months ahead.

The CARRA Annual meeting in Austin, April 16-19, may be the best yet. This year, the steering committee has formed an Annual Meeting Planning Committee, chaired by Suzanne Li and Chuck Spencer and there are many new twists. The agenda is different with the opportunity for folks to attend multiple different smaller work group sessions that we hope will be more conducive to moving research projects forward. We are having a poster session to highlight completed, ongoing, and new project ideas. For the first time (and thanks to AF), we are able to offer travel reimbursement to one CARRA Registry coordinator member per site. This is a huge step forward for us and underlines the significance of our coordinators to pushing the research agenda forward. In addition, patient representatives will be attending the meeting in larger numbers, participating in our work groups and forming a panel in the session on patient engagement. We again have invited residents to the meeting, but for the first time we are having a pre-meeting for fellows (thank you Chuck!) and a dedicated session for early investigators organized by Jay Mehta. There will also be investigators from other networks joining us to learn from us and collaborate on projects. In particular, investigators from PeDRA, the Pediatric Dermatology Research Alliance will be coming. Austin will definitely be the place to be in April!

We have added two people to the CARRA Board of Directors, increasing the number of members to 5. We are delighted and lucky that Steve Russell has joined the board. Steve has a daughter with systemic JIA and has agreed to share his corporate expertise as

Senior Vice President & Chief People Officer at McDonald’s. Learn more about Steve and his family in the newsletter as well. The second new BOD member is Betsy Mellins, known to many of you as one of the founders of CARRA and the first Chair, who put aside her research for several years to make CARRA exist. She has just joined the BOD and you can learn more about her in the next newsletter. The Board meets at least twice yearly but has been meeting much more often with all the changes and new opportunities.

One last important bit of information – we have started a formal strategic planning process led by Kelly Mieszkalski and consultant, Mark Haas (http:// Some of you may remember Mark from prior consulting work with us. We expect the process to take the better part of this year. He will be joining us at the CARRA Annual Meeting and I encourage you to speak with Kelly or Mark about your goals and concerns for CARRA. There will be a sign-up sheet at the Annual Meeting registration desk to arrange a time to meet with Mark. You can also email him at [email protected] to share your thoughts and ideas.

That is all for now. I look forward to seeing everyone in Austin and doing some line dancing and mechanical bronco bucking!

Laura Schanberg, MD