They say time flies when you are having fun. Even so, it is hard for me to believe that three months of my tenure as President of CARRA are already behind me. There are many exciting things happening within CARRA, and I wanted to take a moment to highlight just a few of these.
First, I want to congratulate the sites enrolling patients in the Registry for a job well done- As of Oct 2018 we have over 6700 patients enrolled, with the registry collecting data on patients with JIA as well as a selection of SLE and JDM. In addition, we have successfully finishing enrolling the STOP-JIA comparative effectiveness study of the polyarticular JIA Consensus Treatment Plans (CTPs). Localized and systemic scleroderma are on the cusp of initiating enrollment and we are working plans to engage patients with other conditions.
Registry Update December 7, 2018
CARRA Registry: 7103
STOP-JIA: 402/400 enrollment closed
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The Childhood Arthritis and Rheumatology Research Alliance (CARRA) is pleased to announce completed enrollment of 403 newly diagnosed children with polyarticular JIA children in STOP-JIA (Start Time Optimization of Biologic Therapy in Polyarticular JIA). “We are excited that we were able to complete enrollment in the largest prospective research study of newly diagnosed JIA patients. CARRA was formed a little over 15 years ago to make it possible to do large-scale studies like this in rare rheumatic diseases like JIA,” said Dr. Yukiko Kimura, the lead investigator of the STOP-JIA study and immediate Past President of CARRA.
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
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.