title: Development of consensus treatment plans for juvenile localized scleroderma: a roadmap toward comparative effectiveness studies in juvenile localized scleroderma.
abstract: 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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Hackensack University Medical Center, New Jersey, USA.
authors.forename: Suzanne C
authors.initials: SC
authors.lastname: Li
authors.forename: Kathryn S
authors.initials: KS
authors.lastname: Torok
authors.forename: Elena
authors.initials: E
authors.lastname: Pope
authors.forename: Fatma
authors.initials: F
authors.lastname: Dedeoglu
authors.forename: Sandy
authors.initials: S
authors.lastname: Hong
authors.forename: Heidi T
authors.initials: HT
authors.lastname: Jacobe
authors.forename: C Egla
authors.initials: CE
authors.lastname: Rabinovich
authors.forename: Ronald M
authors.initials: RM
authors.lastname: Laxer
authors.forename: Gloria C
authors.initials: GC
authors.lastname: Higgins
authors.forename: Polly J
authors.initials: PJ
authors.lastname: Ferguson
authors.forename: Andrew
authors.initials: A
authors.lastname: Lasky
authors.forename: Kevin
authors.initials: K
authors.lastname: Baszis
authors.forename: Mara
authors.initials: M
authors.lastname: Becker
authors.forename: Sarah
authors.initials: S
authors.lastname: Campillo
authors.forename: Victoria
authors.initials: V
authors.lastname: Cartwright
authors.forename: Michael
authors.initials: M
authors.lastname: Cidon
authors.forename: Christi J
authors.initials: CJ
authors.lastname: Inman
authors.forename: Rita
authors.initials: R
authors.lastname: Jerath
authors.forename: Kathleen M
authors.initials: KM
authors.lastname: O'Neil
authors.forename: Sheetal
authors.initials: S
authors.lastname: Vora
authors.forename: Andrew
authors.initials: A
authors.lastname: Zeft
authors.forename: Carol A
authors.initials: CA
authors.lastname: Wallace
authors.forename: Norman T
authors.initials: NT
authors.lastname: Ilowite
authors.forename: Robert C
authors.initials: RC
authors.lastname: Fuhlbrigge
mesh_terms: D000293:Adolescent; D032921:Consensus; D004359:Drug Therapy, Combination; D005260:Female; D006801:Humans; D008297:Male; D008727:Methotrexate / Q000008:administration & dosage; D008775:Methylprednisolone / Q000008:administration & dosage; D017410:Practice Guidelines as Topic / Q000592:standards*; D016730:Program Development / Q000379:methods / Q000592:standards*; D016032:Randomized Controlled Trials as Topic / Q000379:methods / Q000592:standards; D012594:Scleroderma, Localized / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy; D012595:Scleroderma, Systemic / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy; D016896:Treatment Outcome; D055815:Young Adult
chemical_list: D008775:Methylprednisolone; D008727:Methotrexate