Childhood Arthritis and Rheumatology Research Alliance (CARRA)

🎃 Happy Halloween from the CARRA staff! Congrats to Karin Tse Park, MPH (a.k.a Hamburgler) who won a 1/2 day off for winning the costume contest! Special thanks to Bailey Parker and Hanna Ho for helping make #remotework more fun at CARRA. 💙

I am so excited the the CARRA Registry has achieved such a monumental milestone of enrolling 15,000 participants, and am very proud to have contributed to both its growth and success over the last 8 years!

Calling all #pedsrheum fellows and early investigators going to #ACRConvergence- we’re excited to announce an opportunity for the peds rheum community to gather! On Sunday afternoon 11/17 from 4:45-5:45pm in Salon 14 at the Marriott Marquis, the #CARRA Early Investigator Committee is hosting an informal early investigator and fellow networking event. Leaders of CARRA research committees (JIA, SLE, cross-cutting, Pain, Rare Disease, Translational Research, Consensus Treatment Plans, Early Investigators) will be there to share opportunities for research involvement. Looking forward to seeing you in DC!

👏 The CARRA Registry recently enrolled its 15,000th participant! The registry, which was launched in 2015, now has more than 15,000 participants across 70 sites. The CARRA Registry is an observational registry that collects clinical and patient-reported information about patients with pediatric-onset rheumatic diseases like juvenile idiopathic #arthritis, #lupus, juvenile dermatomyositis (#JDM), and #scleroderma. 🙌🏽 Thank you to all the researchers, families, and patients who are working together to advance pediatric rheumatology research and improve outcomes for our kids! #pedsrheum, #clinicalresearch, #rheumatology

👉🏽 Don’t forget to join us on Friday for a Q & A session with CARRA staff and leadership about the updates and changes to the 2025 Intramural Grant Program. This is open to all CARRA members, and it's a great chance to ask questions! CARRA members can access the meeting details in the membership portal or contact membership@carragroup.org for the Zoom invitation.

💜 There’s an exciting new paper defining a standard dataset for childhood-onset systemic lupus erythematosus (cSLE) registry research! This research milestone was made possible by a collaboration grant co-sponsored by CARRA and the Paediatric Rheumatology European Association (PReS). 🌟 This is the FIRST set of standardized datasets for cSLE research! 🌟 Developed by an international consensus process which included cSLE experts, patients, and caregivers! 🌟 Harmonized data collection will allow for collaboration between researchers in diverse clinical settings around the world. 🌟 This collaboration will give us greater power to ask and answer important questions about better care and outcomes for children living with cSLE. Thank you to all the researchers who worked so hard to make this happen and congrats to the authors! Rebecca Sadun, Jennifer C Cooper, Alexandre Belot, Tadej Avcin, Amita Aggarwal, Jenny Ainsworth, Stacy Ardoin, Professor Michael W. Beresford, Lynette Bortey, Hermine Brunner, Joyce Chang, Coziana Ciurtin, Ashley Daftary, barbara eberhard, Candace H Feldman, Christian Hedrich, Aimee O Hersh, Linda Hiraki, David A Isenberg, Sylvia Kamphuis, Andrea M Knight, Lou Lambert, Deborah Levy, Stephen D Marks, Naomi Maxwell, Dr. ANGELA MIGOWA, Katharine Moore, Seza Ozen, Rosalind Ramsey-Goldman, Angelo Ravelli, Bryce Reeve, Tamar B Rubinstein, Claudia Saad-Magalhães, and Sujata Sawhney, Laura Schanberg, Emily von Scheven, Christiaan Scott, Mary Beth Son, Gladys Tony, Elissa Weitzman, Scott Wenderfer, Alisha Woodside, Laura Lewandowski, Eve MD Smith and the CARRA SLE Committee and PReS Lupus Working Party. Read more here ➡️ https://lnkd.in/e6NYjkK5

As President & CEO of Lupus and Allied Diseases Association, Inc. (LADA), I am pleased to share along with Board Members Dina Thachet, CCLS and Anne Zablotowicz that the Externally-Led Lupus Nephritis Patient Focused Drug Development (LN PFDD) Meeting hosted by the National Kidney Foundation (NKF) yesterday was a success. Thank you to the NKF for inviting LADA, the Lupus Foundation of America, Inc. (LFA) and Lupus Research Alliance (LRA) to partner with them on this important initiative that gathers key patient insights on the daily impacts of LN, the benefits people with LN are looking for in a treatment, and clinical trial participation for the FDA, pharmaceutical industry and others to advance new therapies. Kudos to David Feldman and the NKF Team, moderator James Valentine, and Dr. Brad Rovin and Dr. Maria Dall’Era for organizing the initiative and the pharmaceutical companies for sponsoring the meeting. We would like to thank the individuals with lupus nephritis and care partners who answered the call to action by taking the survey and participating in the meeting, especially the incredible patient panelists who shared their journeys with tremendous passion, grace, dignity, and courage. It is not easy to bear your souls to strangers and as fellow lupus patient advocates, we applaud you. We look forward to reading the Voice of the Patient Report in the spring. Tiffany Peterson Kaamilah Gilyard Evanne Grate Jeanmarie Ferguson Carly Harrison Andrew Storfer Shamekka Marty PMP, CSM Nikolay P. Nikolov, M.D. Childhood Arthritis and Rheumatology Research Alliance (CARRA) American College of Rheumatology Rheumatology Research Foundation Rheumatology Nurses Society Michigan Lupus Foundation Lupus Foundation of Northern California Association of Women in Rheumatology (AWIR) #patientvoice #lupusnephritis #lupus #fda #patientengagement #qualityoflife #riskbenefit #unmetneed #patientadvocate #collaboration #PFDD #LN #clinicaltrial #lupusresearch

👋🏾 Hey CARRA members, don't forget about our next Town Hall on Friday! This session will be dedicated to fellows and will highlight all of the exciting opportunities for fellows to get involved with CARRA. CARRA members can access the meeting details in the membership portal or contact membership@carragroup.org for the Zoom invitation.

Excited to share our paper defining a standard dataset for cSLE registry research! Our team developed the first standardized core and extended datasets through consensus process to harmonize cSLE data collection in research registries worldwide. This will allow researchers around the world to collect local data for research and also collaboratively pursue a broad range of questions important for cSLE with increased power. The constuction of these datasets will promote international collaboration to advance cSLE research. https://lnkd.in/e5-8a599 This work was made possible by a collaboration grant co-sponsored by Childhood Arthritis and Rheumatology Research Alliance (CARRA) and PReS!