March 2018 Update
Yukiko Kimura, MD
Hackensack University Medical Center
It’s hard to believe my term as President of CARRA is about to come a close. As of July 1, I will be going on to the next phase of the CARRA leadership rotation as the Past President, with Rob Fuhlbrigge stepping in as the new President and Emily von Scheven as Vice President. The new Executive Committee will be rounded out by newly elected Bob Colbert as the new Treasurer and Finance Chair (welcome!), along with our capable Executive Director, Kelly Mieszkalski. Many thanks to Laura Schanberg for her 8 years’ service on the Executive Committee as well as innumerable contributions to our organization, although her work in CARRA is not completed: her vital involvement in many important CARRA projects will continue unabated.
The fact that the last two years have flown by is a testament to the rapid-fire pace and growth of new and exciting developments and projects for CARRA. Our Annual Meeting, which is right around the corner (April 11-15 in Denver), promises to be the best ever, with terrific speakers, panelists, numerous workgroups and increasing numbers of patient and family attendees as well as other stakeholders.
CARRA is extremely thankful for our continued partnership with the Arthritis Foundation, without which much of what we have been able to accomplish would not have been possible. Here are just a few highlights of what CARRA has accomplished in the past two years:
The CARRA Registry
- Successful enrollment of over 5,000 patients, including lupus and dermatomyositis
- Launch of automated CARRA site feedback reports
- Start of our first registration trial (anaSTILLS study*)
- Launch of the CARRA-AF Registry Research Coordinator Pilot Support Program
- Biospecimen collection on STOP-JIA and FROST participants
The progress we’ve made will move us closer to our goal of being able to understand how children with rheumatic diseases are being treated, the safety and effectiveness of the medications being used to treat children, and very importantly, allowing all patients with rheumatic diseases the opportunity to participate in research.
CARRA Consensus Treatment Plans
- Successful enrollment anticipated by July of STOP-JIA (the comparative effectiveness study [CER] of the poly JIA CTPs) and launch of the CER study of the systemic JIA CTPs (FROST)
- Development of CTP guidelines and advisory group (led by Emily von Scheven)
- Publication of CARRA CTP concept paper
The CTPs are a unique concept developed by CARRA that will foster standardization of treatment as well as the ability to compare the treatments being used to treat pediatric rheumatic diseases
- Embedding of patient engagement and participation in CARRA
- Launch of PARTNERS registration to patients and families to participate in research
- Launch of the Rheumatology Learning Health System project to co-produce care with patients
- FDA Patient-Focused Drug Development program being planned with AF for 8/18
Our patients and families are the reason and the guiding light for our research, and should be part of the research process from start to finish
CARRA Intramural Grants and Awards
- Expansion of the CARRA-AF Intramural Grants and Awards Programs* including:
- Increased number of grant opportunities and total amount of funding
- Increased Early Investigator and Fellow programs
- Launch of the CARRA Registry and Bioinformatics Internships
- Implementation of the CARRA Scientific Review Committee process
Developing ideas and supporting workgroup activities as well as our Early Investigators is critical to ensure a robust pipeline of future pediatric rheumatology researchers and solidifying CARRA’s
- More intensive and meaningful collaboration with our international colleagues, including PReS and the UK Collaborative Study Group
- Linking with research efforts of our Canadian colleagues, such as UCAN CAN DU
Pediatric rheumatologists everywhere need to work together and collaborate in order to make faster and more meaningful progress. We need to learn together and from each other.
If all this wasn’t enough to do, CARRA has been undergoing streamlining of our organizational governance structure, strengthening our ethics oversight, increasing and improving our administrative support, and engaging in developing our strategic framework for the next five years.
We could not succeed without the work and support of our entire organization and many individuals, including the Executive Committee, the Steering Committee, the Board of Directors, our superb administrative team, the support of the Arthritis Foundation, and the hard work and dedication of all the CARRA leaders and members over the past 16 years since CARRA’s inception. Thank you for allowing me to serve as President of this growing and vital organization for the past two years. I am excited at the prospect of being able to witness and be a part of CARRA’s continued growth and transformation in the years to come.
Yukiko Kimura, MD