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March 2018 Update

Yukiko Kimura, MD
Yukiko Kimura, MD

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.

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Registry Update August 3, 2018

ENROLLMENTCARRA Registry

CARRA Registry: 6,197
STOP-JIA: 392/400
FROST: 35/200
PEPR: 383/450


REGISTRY NEWSLETTER

The CARRA Registry Newsletter is a quarterly publication for patients, families, and caregivers. View the current issue here or subscribe by clicking the button below.

 

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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The CARRA Registry Intern Experience

As the inaugural interns for the CARRA Registry in 2016, Sarah Ringold and Mary Beth Son were both excited and unsure what to expect. Intern Registry projects have varied quite a bit, and ranged from those that are research based to those that further the development of the Registry itself. Read on to more about their experience


Utrecht Summer School 2017

With sponsorship from CARRA and the Arthritis Foundation, Maya Breitman and Theresa Wampler-Muskardin attended the Utrecht University Summer School course “Why Translational Medicine Fails-And What to do About it” this past July in the Netherlands. This course was created and is directed by the EUREKA Institute of Translational Medicine (http://eurekainstitute.org). EUREKA is a not-for-profit organization established in 2008 by leaders in the field of translational medicine (including pediatric rheumatologist Berent Prakken).


What Caught My Eye: Trauma and SLE: Continuing the Discussion on a link between Adverse Experiences and Autoimmune Disease

Tamar Rubinstein, MD
Children's Hospital at Montefiore

Back in July, Jim Jarvis wrote in “What Caught Our Eye” about an association between Adverse Childhood Experiences (ACEs) and autoimmune disease. He pointed out that over the past decade, evidence has amassed linking ACEs (which include trauma, neglect, parental incarceration, food insecurity, and racial discrimination) to poor health and the development of chronic disease. This association is observed across cultures and people that have differed by geography, ethnicity, and even era of time. Many studies have noted a dose response, where more cumulative experiences lead to increasing risk of disease. And as Jim pointed out a few months ago, autoimmune diseases appear to follow the same pattern.

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We are grateful for our partnership with the Arthritis Foundation. Read Arthritis Foundation News & Announcements.

 

 

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