Development of consensus treatment plans for juvenile localized scleroderma: A roadmap toward comparative effectiveness studies in juvenile localized scleroderma

Suzanne C. Li, Kathryn S. Torok, Elena Pope, Fatma Dedeoglu, Sandy Hong, Heidi T. Jacobe, C. Egla Rabinovich, Ronald M. Laxer, Gloria C. Higgins, Polly J. Ferguson, Andrew Lasky, Kevin Baszis, Mara Becker, Sarah Campillo, Victoria Cartwright, Michael Cidon, Christi J. Inman, Rita Jerath, Kathleen M. O'Neil, Sheetal VoraAndrew Zeft, Carol A. Wallace, Norman T. Ilowite, Robert C. Fuhlbrigge

Research output: Contribution to journalArticlepeer-review

165 Scopus citations


Objective Juvenile localized scleroderma (LS) is a chronic inflammatory skin disorder associated with substantial morbidity and disability. Although a wide range of therapeutic strategies has been reported in the literature, a lack of agreement on treatment specifics and accepted methods for clinical assessment has made it difficult to compare approaches and identify optimal therapy. Our objective was to develop standardized treatment plans, clinical assessments, and response criteria for active, moderate to high severity juvenile LS. Methods A core group of pediatric rheumatologists, dermatologists, and a lay advisor was engaged by the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to develop standardized treatment plans and assessment parameters for juvenile LS using consensus methods/nominal group techniques. Recommendations were validated in 2 face-to-face conferences with a larger group of practitioners with expertise in juvenile LS and with the full membership of CARRA, which encompasses the majority of pediatric rheumatologists in the US and Canada. Results Consensus was achieved on standardized treatment plans that reflect the prevailing treatment practices of CARRA members. Standardized clinical assessment methods and provisional treatment response criteria were also developed. Greater than 90% of pediatric rheumatologists responding to a survey (66% of CARRA membership) affirmed the final recommendations and agreed to utilize these consensus plans to treat patients with juvenile LS. Conclusion Using consensus methodology, we have developed standardized treatment plans and assessment methods for juvenile LS. The high level of support among pediatric rheumatologists will support future comparative effectiveness studies and enable the development of evidence-based guidelines for the treatment of juvenile LS.

Original languageEnglish
Pages (from-to)1175-1185
Number of pages11
JournalArthritis Care and Research
Issue number8
StatePublished - Aug 2012


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