Services provided to researchers

  • High case ascertainment: goal of over 90% response from more than 2,500 participants
  • Very inexpensive means of identifying and obtaining data on rare diseases and conditions
  • Active surveillance: participants complete the check-off form each month, indicating new cases or ‘nothing to report’
  • Timely surveillance: a mail-out or e-mail each month to all participants
  • All administrative services
  • High response rate: follow-up reminders to participants who have not responded
  • Timely feedback of results to participants: quarterly summary reports
  • Full-time program manager
  • Access to a CPSP medical advisor (CPS Medical Affairs Director)
  • Full vetting of research proposals by the CPSP Steering Committee
  • Annual surveillance summaries, authored by each researcher, published in the CPSP Results
  • Presentation of surveillance results summaries at the Steering Committee meetings – opportunity for discussion
  • Opportunity for international collaboration with other paediatric surveillance units worldwide
  • The chance to make a difference in the health and well-being of Canadian children and youth
  • Increased awareness of rare paediatric conditions among the health-care community
  • Existence of an effective active surveillance system, should a new public health issue arise

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