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
Registry Update January 19, 2018
CARRA Registry: 4,793
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?”
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).
When Kyle Phillips joined the Children's Hospital Colorado site in December 2016 as the CARRA Registry Coordinator, he was both new to CARRA and new to research. The site had been activated for 3 months and had enrolled only one patient. Wow things have changed in just a few short months! With Kyle on board to help enroll about 2 patients each week into the CARRA Registry, Colorado has shot from 52nd to 8th in terms of weekly enrollment rate, and has expanded study participation to include all sub studies and bio sample collection. Children’s Hospital Colorado now has 89 patients enrolled in the Registry, 9 patients enrolled in STOP-JIA, 2 patients enrolled in FROST, and 5 bio samples collected. Kyle works on 5 other studies and spends about 50% of his time on the CARRA Registry. What makes Kyle so successful, you might ask?
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.