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September 2016 Update

To follow Laura Schanberg as President of CARRA is a daunting task! Under Laura’s leadership, we successfully enrolled the CARRA Legacy Registry, formed a 501c3 organization replete with a Board of Directors, an External Advisory Council, and new by-laws. We have a new website and a partnership with the Arthritis Foundation. We funded and launched the new CARRA Registry, began the first CTP comparative effectiveness study, and are working with Novartis and Roche on post marketing surveillance. CARRA is a part of PARTNERS, a patient-powered research network and began incorporating patient engagement in research. The 2016 annual meeting was a tremendous success, had a record attendance, and the energy was palpable. That energy continues with work groups pressing ahead on major initiatives. There are roughly 15 publications in progress. Laura’s contributions are too numerous to list, but I am honored to follow her. I look forward to all we can achieve together over the next 2 years. We look forward to the 2017 meeting in Houston, the planning for which is already in progress. Steering Committee members and annual meeting tri-chairs, Stacy Ardoin, Peter Blier, and Adam Huber, are working with Executive Director Kelly Mieszkalski to plan the meeting, which will be in conjunction with PRSYM. Stacy, who heads the abstract committees of both CARRA and PRSYM, has worked with Jason Jones, Sr. Director of Research, and the ACR to develop a jointly managed abstract program.

Carol Wallace: Visionary, Innovator, Collaborator, and Clinician

Carol has retired from the University of Washington, but she’s not leaving pediatric rheumatology or CARRA!

Expanded Presence at JA Conference

At the Arthritis Foundation’s JA Conference in Phoenix, July 14-17, CARRA had an increased presence! While CARRA members have presented at JA conferences for years, this represents the first time CARRA was an official participant, hosting a table with staff and members available to talk with attendees and information on CARRA publications and the CARRA Registry.

CARRA Grants

CARRA offers its members several funding opportunities that leverage the CARRA network to further research, positively impact the pediatric rheumatology scientific community, and advance the CARRA mission. For more information on these opportunities, please visit the Grants & Funding page.

Registry Update August 2016

Registry Stats
Enrollment: 1,769
10 sites have enrolled 1-5 patients
33 sites have enrolled 6-49 patients
9 sites have enrolled 50 or more patients

Top Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 214
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 158
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 154

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LetsStopJIATogetherSTOPJIA is a prospective, observational study comparing the clinical effectiveness and impacts on patient-reported outcomes of three different treatment strategies (CTPs) in new onset pJIA patients to answer the question of when to start biologic medications.

View the STOP-JIA Prezi.

 

STOP-JIA Press Release March 2016

The Childhood Arthritis and Rheumatology Research Alliance (CARRA), Inc. announced today that the first two patients had enrolled in the Start Time Optimization in Polyarticular Juvenile Idiopathic Arthritis (STOP-JIA) project. STOP-JIA aims to answer a critical question facing patients and doctors: “When is the best time to start biologic medications in polyarticular JIA?”

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Some breast milk a day keeps the IVIG away?

Perhaps you missed the New York Times article published in October 2015,  “Overselling Breast Feeding” or the firestorm that erupted afterwards. I didn’t. I was up nursing my newborn on our first week home and reading resultant Facebook posts, emails, and even an...

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We are grateful for our partnership with the Arthritis Foundation. Read more news & updates…

 

 

 

 

partners logoCARRA is part of a new national research network called PARTNERS, which links researchers, patient communities, clinicians, and health care systems.