Article Text

other Versions

PDF
Daslne: The challenge of developing a regional database for Autism Spectrum Disorder.
  1. Helen McConachie (h.r.mcconachie{at}ncl.ac.uk)
  1. Newcastle University, United Kingdom
    1. Raymond Barry (raymond.barry{at}nuth.nhs.uk)
    1. Newcastle upon Tyne Hospitals Trust, United Kingdom
      1. Anna Spencer (a.spencer{at}ncl.ac.uk)
      1. Newcastle University, United Kingdom
        1. Louise Parker (ls725899{at}dal.ca)
        1. Dalhousie University, Canada
          1. Ann S Le Couteur (a.s.le-couteur{at}ncl.ac.uk)
          1. Newcastle University, United Kingdom
            1. Allan F Colver (allan.colver{at}ncl.ac.uk)
            1. Newcastle University, United Kingdom

              Abstract

              The paper describes the setting up of a database of children with autism spectrum disorder (ASD) in the north east of England. Best practice has been followed including involvement of parents in planning and implementation at all stages, oversight by a multi-agency group, management by a multidisciplinary steering group, and independent administration of the database. From a potential listing of 986 children with ASD aged 3 to 12 years, the parents of 511 have so far responded (51.8%) although response rate varies considerably by local authority. Data checking has shown the information to be valid, and case ascertainment broadly representative. The uses to which data are being put, and the continuing challenges, are outlined.

              Statistics from Altmetric.com

              Request permissions

              If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.