CARRA Newsletter
March 16, 2016
Table of Contents
If you missed What Caught Our Eye last week, here it is again!  In the new, improved CARRA website that will launch at the CARRA annual meeting, you will be able to comment and dialogue with the authors! If you have ideas for articles we should highlight, or you are interested in contributing write-ups, please contact Jay ( or Brian (
Biomarkers by Brian Feldman 
What's old is new, right? We used to have the patient history - now we have "patient reported outcome measures". We used to have the physical exam, and other signs (like, say, lab tests or Xrays) - now we have "biomarkers". It's kind of cool how we can spin all that old fashioned stuff into... well... new-fashioned stuff.

But, spin or no spin, for the last while, biomarkers and biomarker research has been really hot.

So, when a group of eye docs and pedi rheum docs - from Germany and Switzerland - published a paper looking at S100 proteins (think, chemicals that our macrophages and innate immune cells let loose in response to tissue damage - damage-associated molecular pattern molecules (DAMPs)) as a measure of eye inflammation in uveitis, we took notice .

Our colleagues in Muenster (and their collaborators, of course) have shown that these proteins - especially, (technical alert) S100A8, S100A9 and S100A12 (or calgranulin A, B and C) - are really useful in a bunch of ways. Read more on this topic...
carranewsCARRA News

If you haven't already registered for the CARRA Annual Meeting, please register HERE . Join your 300+ colleagues who have already registered!
With more than 820 subjects enrolled at 46 active sites, the CARRA Registry (NCT02418442) supports data collection on patients with pediatric-onset rheumatic diseases. The CARRA Registry forms the basis for future CARRA studies, and this observational registry will be used to answer pressing questions about therapeutics used to treat pediatric rheumatic diseases, including safety questions.
What's stopping you from getting started with STOP-JIA? This PCORI-funded study is enrolling newly diagnosed patients with Polyarticular JIA.  We need to enroll subjects at the visit when the diagnosis was made; so, if you have a question about whether or not a subject qualifies, please contact Yuki Kimura (, Sarah Ringold (, Laura Schanberg (, or Jason Jones (  

Patient-facing materials to aide in the discussion and understanding of STOP-JIA, are located here.

Update from the CARRA Marketing Committee

Dear colleagues:

As chair of the CARRA marketing committee, I would like to ask you for your support on two separate initiatives to help solidify our relationship with the Arthritis Foundation.

The first one would direct our families to the AF website, or social media platforms, by embedding some or all of the following tag lines into the after visit summary or depart paperwork of your EHR (this can be entered manually when appropriate by using smart phrases, or built into your AVS by your IT team):

Visit for information and resources!
If you use Twitter, follow or @kidsarthritis.
On Facebook, join or like Kids Get Arthritis Too!
Ask your provider if you quality for the CARRA Registry ( Identifier NCT02418442), an observational study of children with a variety of rheumatologic conditions.

Walk to Cure Arthritis is the Arthritis Foundation's annual community fundraising 5K event.  Join the team at NAME OF HOSPITAL on DATE as we raise awareness and funds!  Email NAME OF TEAM LEADER to join us to cure arthritis!

The second initiative will help to create more robust Juvenile Arthritis committees throughout the six designated regions of the Arthritis Foundation. As you can see from the map, each region has a number of offices, or markets, and each of these has, or should have, a Juvenile Arthritis committee. If you are within striking distance of one of these offices (see the map), please contact CARRA (, and we will put you in touch with the regional vice president. This would put you in a position to establish programs for our children. Once on the committee, you may also want to serve on the local leadership board. If you already serve on a committee, thank you for all the great work you have accomplished.  

These two simple tasks will help continue our tradition of partnering with the Arthritis Foundation. It's the right thing to do. Please contact Yuki, Laura, or me, with any additional questions.


Larry Zemel, MD

Chair, CARRA marketing committee for Peter Chira, MD; Kathy Haines, MD; Yuki Kimura, MD; Tova Ronis, MD; Laura Schanberg, MD

The TRTC is considering optimal long-term biobanking options for CARRA, including a commercial central biobank. Nora Singer, as a past TRTC chair and experienced translational researcher, will be heading this effort assisted by Jim Jarvis, Lauren Henderson, and Jason Jones.  This is an important effort with major downstream implications for CARRA. Participation is open to all interested CARRA members. If you are interested in participating in TRTC, please contact Jason Jones, . Please note that this will be a real commitment, including weekly 30-minute conference calls and discussions at the annual meeting in April.

This year brings growth, change, and new faces to CARRA. We are pleased to welcome two new staff members to the team!

Terri SmTerriSmith.jpg ith joins CARRA as our Executive Assistant.  In her most recent role, Terri se rved as the virtual Office Administrator for the non-profit organization, CAIR.  Prior to this she managed operations for a 17-office cardiology practice in North Carolina.  She has a great deal of experience in delivering projects and events on time, facilitating committees, and we expect her role will significantly improve our detail management, activity tracking, and overall productivity.  Terri can be reached at 919-637-9911 and at .

Heather Barnes joins CARRA as Communications & Operations Manager. Heather b rings to CARRA a background in digital communications and content mana gement, information & library science, and print publishing. She received her BA from Smith College and her MS from the University of North Carolina at Chapel Hill's School of Information and Library Science, and has worked primarily in academic and nonprofit organizations. Most recently, she worked with miraclefeet , a nonprofit organization that aims to eradicate the disability caused by clubfoot in low-resource countries. Heather lives in sunny Carrboro, North Carolina, with her 7-year-old daughter, and may be reached at .

Your help is needed to improve measurement of flares in lupus patients! The Criteria of Global Disease Flare in Children and Adolescents with Lupus were developed collaboratively in 2011 , but require validation before they can be used in practice. As part of this effort, practicing pediatric rheumatologists are needed to rate a limited number of patient profiles describing disease courses in children and adolescents with SLE. To participate, please provide your contact information here.

Important study announcement!  Participate in a study to better understand the clinical characteristics and other factors in sJIA patients whose course has been complicated by pulmonary disease.  Click here for information or contact Michal Cidon,

The Pediatric Nephrology and Rheumatology Collaborative Group asks that you complete a survey to determine the most common approaches for treating children with refractory proliferative lupus nephritis, and isolated membranous lupus nephritis. The goal is to develop Best Care Protocols that can eventually be compared to one another. This survey is for CARRA members only. Please participate!  

Scleroderma Foundation is hosting a National Patient Education Conference in New Orleans, July 29-31.  Any child, a patient or a sibling of a patient, is welcome to join the program. Click here for more information!

Join the discussion now at, a blog focused on autoinflammatory disease and hosted by CARRA member Jon Hausman!

AFArthritis Foundation News and Announcements

The Arthritis Foundation recently underwent a strategic and geographic reorganization.  They have a new office in Atlanta where we met in January and learned about the new regional division of the United States.
The Arthritis Foundation's JA camps give kids with arthritis and related conditions the chance to make lasting memories. For many campers, it's the first time they've met other kids who live with the same challenges.  There are some 50 JA camps across the country.  To see camp locations, go to
ResearchResearch Funding Opportunities
CARRA Registry Fellowship: Request for Applications
This fellowship is designed to immerse the interested successful applicant in operational, leadership, support and scientific aspects of the new multicenter observational registry which will be used to answer pressing questions about pediatric rheumatic diseases, including drug safety. Click here for more information.
The Lupus Foundation of America seeks applications whose research results will significantly enhance the current understanding of the short or long-term, physical and/or mental health outcomes of children and adolescents with lupus, as well as the long-term outcomes/late effects of childhood-onset lupus and its associated treatment. The ultimate goal of this research is to improve the health outcomes of individuals who develop lupus during childhood. 
Click here for additional information.  The Foundation is particularly interested in projects that utilize the lupus portion of the CARRA registry-the largest pediatric rheumatology registry in North America.

Pfizer provides grants for autoimmune and inflammatory disease research. Applications can be on basic research in the etiology of autoimmune and inflammatory diseases or clinical research.  This Program is available only to junior and senior Investigators based in the United States. Awards can be up to a maximum of $150,000 each. Research projects are expected to complete within 2 years of study start. Larger grants may be considered depending on scope and merit of proposal.  Review the process and opportunities here.
Novartis supports investigator-initiated trials (IIT), both clinical and non-clinical studies. Guidelines for submitting a proposal for an IIT can be found here .

Bristol-Myers Squibb considers requests for non-interventional research and gives priority to proposals that support their medical plans. Find out how to apply here .

AbbVie's investigator-initiated studies program is accepting applications until March 15 for an April review.  Applications received between March 15-June 15, will be reviewed in July.  Review the process here .

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