title: Establishing a high-risk neuroblastoma cohort using the Pediatric Health Information System Database.
abstract: International Classification of Diseases, 9th Revision (ICD-9) code(s) for neuroblastoma do not exist, preventing identification of these patients in administrative databases. To overcome this challenge, a three-step algorithm, using ICD-9 codes, exclusion criteria, and manual review of chemotherapy billing data, was utilized to assemble a high-risk neuroblastoma cohort (n = 952) from the Pediatric Health Information System (PHIS) Database and validated at a single institution [sensitivity 89.1%; positive predictive value (PPV) 96.1%]. This cohort provides a data source for future comparative effectiveness and clinical epidemiology studies in high-risk neuroblastoma patients.
authors.affiliation: Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.|Center for Clinical Epidemiology and Biostatistics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.|Center for Pharmacoepidemiology Research and Training, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
authors.forename: Ami V
authors.initials: AV
authors.lastname: Desai
authors.affiliation: Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Marko
authors.initials: M
authors.lastname: Kavcic
authors.affiliation: Center for Pediatric Clinical Effectiveness, The Children's Hospital of Philadelphia, Philadelphia, PA.
authors.forename: Yuan-Shung
authors.initials: YS
authors.lastname: Huang
authors.affiliation: Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
authors.forename: Nicole
authors.initials: N
authors.lastname: Herbst
authors.affiliation: Center for Clinical Epidemiology and Biostatistics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.|Center for Pediatric Clinical Effectiveness, The Children's Hospital of Philadelphia, Philadelphia, PA.|Division of Infectious Diseases, The Children's Hospital of Philadelphia, Philadelphia, PA.|Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
authors.forename: Brian T
authors.initials: BT
authors.lastname: Fisher
authors.affiliation: Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.|Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
authors.forename: Alix E
authors.initials: AE
authors.lastname: Seif
authors.affiliation: Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.|Center for Clinical Epidemiology and Biostatistics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.|Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
authors.forename: Yimei
authors.initials: Y
authors.lastname: Li
authors.affiliation: Center for Clinical Epidemiology and Biostatistics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.|Center for Pharmacoepidemiology Research and Training, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.|Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
authors.forename: Sean
authors.initials: S
authors.lastname: Hennessy
authors.affiliation: Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.|Center for Clinical Epidemiology and Biostatistics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.|Center for Pharmacoepidemiology Research and Training, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.|Center for Pediatric Clinical Effectiveness, The Children's Hospital of Philadelphia, Philadelphia, PA.|Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
authors.forename: Richard
authors.initials: R
authors.lastname: Aplenc
authors.affiliation: Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.|Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
authors.forename: Rochelle
authors.initials: R
authors.lastname: Bagatell
mesh_terms: D000293:Adolescent; D000328:Adult; D000465:Algorithms; D000970:Antineoplastic Agents / Q000191:economics; D002173:Cancer Care Facilities / Q000706:statistics & numerical data; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D016208:Databases, Factual; D004363:Drug Utilization / Q000191:economics; D005260:Female; D063005:Health Information Systems / Q000706:statistics & numerical data*; D006295:Health Resources / Q000706:statistics & numerical data; D006776:Hospitals, Pediatric / Q000706:statistics & numerical data; D006801:Humans; D007223:Infant; D007297:Inpatients / Q000706:statistics & numerical data; D038801:International Classification of Diseases; D008297:Male; D009447:Neuroblastoma / Q000175:diagnosis / Q000188:drug therapy / Q000453:epidemiology*; D011306:Prescription Fees; D012306:Risk; D062606:Tertiary Care Centers / Q000706:statistics & numerical data; D014481:United States / Q000453:epidemiology; D055815:Young Adult
chemical_list: D000970:Antineoplastic Agents
keywords: administrative database; cohort validation; neuroblastoma