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President's Updates

September 2017 Update

Yukiko Kimura, MD
Hackensack University Medical Center

The first day of autumn is always a little bittersweet: it signals the end of the long days of summer and vacations, but there’s also excitement about the new season and a fresh start. Of course the work never stops for an organization like CARRA, but the Fall season is again bringing many exciting changes! It’s clear that Arthritis Foundation support continues to be critical to the progress that we’ve made since our partnership began in 2015.

Here’s what we are expecting for CARRA in the last quarter of 2017:

  • The 4,000th enrolled patient in the CARRA Registry
  • Enrolling the first patients with JDM and scleroderma in the CARRA Registry
  • Activation of up to 10 new CARRA Registry sites (total number going up to 70 sites)
  • Activation of our first non-North American registry site at Tel Aviv University in Israel
  • Launch of a small pilot program to support research coordinator start up at a few sites (more details and call for applications available shortly)
  • Activation of the new CARRA Scientific Review Committee (led by Terry Moore)
  • 2nd 2017 cycle of Small Grants and the 2017 Large Grants to be awarded
  • Launch of the CARRA Ethics and Conflict of Interest Committee
  • Launch of the NICHD PROMOTE grant (Mara Becker and Sue Thompson, co-PIs) to study methotrexate pharmacogenetics in CARRA Registry participants

There are also exciting new international initiatives afoot. Here are just a few examples:

  • Collaboration with the UCAN CAN DU (Canadian Dutch) precision medicine project, which will bring user friendly approaches to data entry by patients and clinicians alike, including for the CARRA Registry in Canada.
  • UCAN CAN DU and the AF-funded The Dartmouth Institute (TDI) project are working together to develop care co-production dashboards for patients in CARRA, PR-COIN and Rise Registries.
  • Collaboration with PReS to develop a comprehensive research training program for promising pediatric rheumatology early investigators worldwide

Discussions about a range of potential collaborations were held with PReS leaders at their annual meeting in Athens earlier this month, ushering in what will hopefully be a new era of global initiatives in pediatric rheumatology. I spoke at both the PReS general meeting and the PReS executive council to update members about CARRA activities and potential joint efforts. In addition, Hanna Kim spoke for the CARRA Early Investigators at the PReS Young Investigator Meeting, generating even more excitement about working together. We also began a patient/parent exchange program for the CARRA and PReS meetings this year which has spawned new ideas about patient engagement in care and research. As the meeting progressed, it became clear that PReS and CARRA share many goals and challenges and are pursuing parallel initiatives. Frequent communication at many levels of both organizations and collaborating on projects and approaches to our challenges will increase efficiency and open our small communities to the best ideas from around the world.  The CARRA leadership looks forward to working together with our international colleagues going forward, and welcoming more international participation at our annual meetings. Working together will certainly bring more powerful, less redundant and more expedient benefits for patients, families, clinicians and researchers alike.

I look forward to speaking to many of you about these and other initiatives at the ACR meeting in San Diego!