title: Design of a Multisite Study Assessing the Impact of Tic Disorders on Individuals, Families, and Communities.
abstract: Tic disorders, including Tourette syndrome, are complex, multisymptom diseases, yet the impact of these disorders on affected children, families, and communities is not well understood.
  
  
  
  To improve the understanding of the impacts of Tourette syndrome, two research groups conducted independent cross-sectional studies using qualitative and quantitative measures. They focused on similar themes, but distinct scientific objectives, and the sites collaborated to align methods of independent research proposals with the aim of increasing the analyzable sample size.
  
  
  
  Site 1 (University of Rochester) was a Pediatric Neurology referral center. Site 2 (University of South Florida) was a Child Psychiatry referral center. A total of 205 children with tic disorders were enrolled from both studies. The University of Rochester also enrolled 100 control children in order to clearly isolate impacts of Tourette syndrome distinct from those occurring in the general population. The majority of children with tic disorders (n = 191, 93.1%) had Tourette syndrome, the primary population targeted for these studies. Children with Tourette syndrome were similar across sites in terms of tic severity and the occurrence of comorbid conditions. The occurrence of psychiatric comorbidities in the control group was comparable with that in the general pediatric population of the United States, making this a well-justified comparison group.
  
  
  
  Through collaboration, two sites conducting independent research developed convergent research methods to enable pooling of data, and by extension increased power, for future analyses. This method of collaboration is a novel model for future epidemiological research of tic disorders.
authors.affiliation: Department of Neurology, University of Rochester Medical Center, Rochester, New York. Electronic address: Erika_augustine@urmc.rochester.edu.
authors.forename: E F
authors.initials: EF
authors.lastname: Augustine
authors.affiliation: Department of Neurology, University of Rochester Medical Center, Rochester, New York.
authors.forename: H R
authors.initials: HR
authors.lastname: Adams
authors.affiliation: Child Development Studies Team, Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia.
authors.forename: R H
authors.initials: RH
authors.lastname: Bitsko
authors.affiliation: Department of Public Health Sciences, University of Rochester Medical Center, Rochester, New York.
authors.forename: E
authors.initials: E
authors.lastname: van Wijngaarden
authors.affiliation: Child Development Studies Team, Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia.
authors.forename: A H
authors.initials: AH
authors.lastname: Claussen
authors.affiliation: Department of Neurology, University of Rochester Medical Center, Rochester, New York.
authors.forename: A
authors.initials: A
authors.lastname: Thatcher
authors.affiliation: Department of Pediatrics, University of South Florida, Rothman Center for Neuropsychiatry, St. Petersburg, Florida.
authors.forename: C E
authors.initials: CE
authors.lastname: Hanks
authors.affiliation: Department of Pediatrics, University of South Florida, Rothman Center for Neuropsychiatry, St. Petersburg, Florida.
authors.forename: A B
authors.initials: AB
authors.lastname: Lewin
authors.affiliation: Department of Psychiatry, University of Rochester Medical Center, Rochester, New York.
authors.forename: T G
authors.initials: TG
authors.lastname: O'Connor
authors.affiliation: Department of Neurology, University of Rochester Medical Center, Rochester, New York.
authors.forename: A
authors.initials: A
authors.lastname: Vierhile
authors.affiliation: Child Development Studies Team, Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia.
authors.forename: M L
authors.initials: ML
authors.lastname: Danielson
authors.affiliation: Atlantic Neuroscience Institute, Overlook Medical Center, Summit, New Jersey.
authors.forename: R
authors.initials: R
authors.lastname: Kurlan
authors.affiliation: Department of Pediatrics, University of South Florida, Rothman Center for Neuropsychiatry, St. Petersburg, Florida.
authors.forename: T K
authors.initials: TK
authors.lastname: Murphy
authors.affiliation: Department of Neurology, University of Rochester Medical Center, Rochester, New York.
authors.forename: J W
authors.initials: JW
authors.lastname: Mink
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D015897:Comorbidity; D003299:Cooperative Behavior; D003430:Cross-Sectional Studies; D005190:Family / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D036301:Qualitative Research; D012107:Research Design; D013981:Tic Disorders / Q000150:complications / Q000453:epidemiology* / Q000523:psychology*; D014481:United States / Q000453:epidemiology
keywords: Tourette syndrome; epidemiology; research design; research methods; tics