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 February 1, 2019
CARRA Registry: 7519
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.
Thank you to everyone who joined us at the CARRA activities held during the 2018 ACR/ARHP Annual Conference. We had a great turnout at the CARRA meeting, CARRA/Arthritis Foundation Co-hosted Reception, and CARRA Fellow/Early Investigator Reception. Additionally, several CARRA-related projects were presented in sessions and as posters.
The FIRST EVER CARRA Registry Retreat will be January 28, 2019! This will be a unique one-day event for principal investigators, sub-investigators and coordinators from every CARRA Registry site. The purpose of the retreat is to facilitate and improve the experience of participating in the Registry by actively engaging with one another through small groups, panel discussions, brainstorming, problem-solving, role-playing and training.
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.