Increasing collaborations with the international pediatric rheumatology community is critical to making major scientific advances in rare diseases. CARRA is committed to facilitating international research efforts, but this increases the complexity of the research process. Working collaboratively with current funders and continuing to develop new funding streams is also important to ensure the organization’s financial sustainability.
The challenge to the pediatric rheumatology community is maintaining the principles that have allowed CARRA to grow & thrive while translating its successes into important scientific advances & discoveries for patients & families going forward.
Lastly, the current leadership of CARRA were all members of the original cohort of pediatric rheumatologists that founded CARRA and will need to be replaced. Given the low numbers of pediatric rheumatologists trained in the late 1990s and the significant increase in the numbers of pediatric rheumatology fellows now being trained, the pediatric rheumatology community will need to rely on younger members with less experience to assume leadership positions within the organization. It is, therefore, a major imperative for current CARRA leaders to nurture and foster future generations.
With that in mind, the Early Investigator Committee, whose leadership serves on the Steering Committee, was developed. Responsibilities of the Early Investigator Committee include encouraging promising young investigators to become involved in all levels of CARRA activities and fostering engagement with international counterparts. In addition, there are formal leadership development programs for all Steering Committee members, as well as informal mentoring of each committee chair by a member of the CARRA executive team.
In summary, the future of academic pediatric rheumatology seems brighter than ever, with a growing workforce and a variety of effective medications to treat pediatric rheumatic diseases and prevent life-altering disability; however, there is still much to be learned.
The culture of transparency and scientific collaboration that has been fostered and maintained by CARRA has led to its current level of success and promises to change clinical practice and improve health outcomes. The challenge to the pediatric rheumatology community is maintaining the principles that have allowed CARRA to grow and thrive while translating its successes into important scientific advances and discoveries for patients and families going forward.
Yukiko Kimura, MD, is chair of the Childhood Arthritis & Rheumatology Research Alliance (CARRA) and chief of pediatric rheumatology at Joseph M. Sanzari Children’s Hospital, Hackensack University Medical Center, Hackensack, N.J.
Laura E. Schanberg, MD, is immediate past chair of CARRA and co-chief of pediatric rheumatology at Duke University Medical Center, Durham, N.C.
References
- Cassidy JT, Athreya B. Pediatric rheumatology: Status of the subspecialty in United States medical schools. Arthritis Rheum. 1997 Jun;40(6):1182.
- Schanberg LE, Sandborg C, Barnhart HX, et al. Premature atherosclerosis in pediatric systemic lupus erythematosus: Risk factors for increased carotid intima-media thickness in the atherosclerosis prevention in pediatric lupus erythematosus cohort. Arthritis Rheum. 2009 May;60(5):1496–1507.
- Wallace CA, Giannini EH, Spalding SJ, et al. Trial of early aggressive therapy in polyarticular juvenile idiopathic arthritis. Arthritis Rheum. 2012 Jun;64(6):2012–2021.
- Ilowite NT, Prather K, Lokhnygina Y, et al. Randomized, double-blind, placebo-controlled trial of the efficacy and safety of rilonacept in the treatment of systemic juvenile idiopathic arthritis. Arthritis Rheumatol. 2014 Sep;66(9):2570–2579.
- DeWitt EM, Kimura Y, Beukelman T, et al. Consensus treatment plans for new-onset systemic juvenile idiopathic arthritis. Arthritis Care Res (Hoboken). 2012 Jul;64(7):1001–1010.
- Li SC, Torok KS, Pope E, et al. Development of consensus treatment plans for juvenile localized scleroderma: A roadmap toward comparative effectiveness studies in juvenile localized scleroderma. Arthritis Care Res (Hoboken). 2012 Aug;64(8):1175–1185.
- Huber AM, Giannini EH, Bowyer SL, et al. Protocols for the initial treatment of moderately severe juvenile dermatomyositis: Results of a Children’s Arthritis and Rheumatology Research Alliance Consensus Conference. Arthritis Care Res (Hoboken). 2010 Feb;62(2):219–225.
- Huber AM, Robinson AB, Reed AM, et al. Consensus treatments for moderate juvenile dermatomyositis: Beyond the first two months. Results of the second Childhood Arthritis and Rheumatology Research Alliance consensus conference. Arthritis Care Res (Hoboken). 2012 Apr;64(4):546–553.
- Mina R, von Scheven E, Ardoin SP, et al. Consensus treatment plans for induction therapy of newly diagnosed proliferative lupus nephritis in juvenile systemic lupus erythematosus. Arthritis Care Res (Hoboken). 2012 Mar;64(3):375–383.
- Kimura Y, Beukelman T, Morgan E, et al. Results from the Childhood Arthritis and Rheumatology Research Alliance Systemic JIA Consensus Treatment Plans Pilot Study. Arthritis Rheum. 2015 Oct;67(S10):959.
- Reed A, Huber A, Tomlinson G, et al. CARRA dermatomyositis CPT pilot study. Pediatr Rheumatol. 2016 Jul;14(Suppl 1):P23.
- Cooper JC, Eberhard BA, Punaro M, A, et al. A pilot study of consensus treatment plans for induction therapy in childhood proliferative lupus nephritis. Arthritis Rheum. 2016; Submitted.
- Li SC, Torok KS, Hong SD, et al. Initial results of a pilot juvenile localized scleroderma comparative effectiveness study [abstract]. Arthritis Rheumatol. 2015 Oct;67(Suppl 10):3095.
- Smith MY, Sobel RE, Wallace CA. Monitoring the long-term safety of therapies for children with juvenile idiopathic arthritis: Time for a consolidated patient registry. Arthritis Care Res (Hoboken). 2010 Jun;62(6):800–804.
- Lionetti G, Kimura Y, Schanberg LE, et al. Using registries to identify adverse events in rheumatic diseases. Pediatrics. 2013;132(5):e1384–e1394.
