title: Collaborating with consumers: the key to achieving statutory notification for birth defects and cerebral palsy in Western Australia.
abstract: BACKGROUND
  The Western Australian Birth Defects Registry and the Western Australian Cerebral Palsy Register used multiple sources of voluntary notification without consent and have a high level of case ascertainment, but there were concerns over privacy and a call for statutory notification.
  
  
  OBJECTIVE
  To seek consumer consensus on whether notification to the registers should be statutory or only with consent.
  
  
  METHODS
  Two facilitated workshops for consumer and community members of groups representing people with birth defects, cerebral palsy and disability, and the Western Australian Health Consumers' Council.
  
  
  RESULTS
  Parent groups and the Health Consumers' Council were unanimous in their support for statutory notification, with 3 conditions: that comprehensive and open information be provided to consumer groups and community; that consumers have input into the development of statutory notification; and that an opt-out clause be included. A Consumer Reference Group was established. They decided on a name for the new register (Western Australian Register of Developmental Anomalies), developed an opt-out clause and reviewed drafts of the regulations for statutory notification. The regulations came into effect in January 2011.
  
  
  CONCLUSIONS
  Consumers were key to achieving statutory notification. We encourage others to engage with their consumers and community in equal partnership for mutual benefit.
authors.forename: Carol
authors.initials: C
authors.lastname: Bower
authors.forename: Anne
authors.initials: A
authors.lastname: McKenzie
authors.forename: Linda
authors.initials: L
authors.lastname: Watson
authors.forename: Adrian
authors.initials: A
authors.lastname: Charles
mesh_terms: D002547:Cerebral Palsy / Q000453:epidemiology*; D000013:Congenital Abnormalities / Q000453:epidemiology*; D003258:Consumer Behavior; D003299:Cooperative Behavior; D006801:Humans; D019221:Mandatory Reporting; D012042:Registries; D014904:Western Australia / Q000453:epidemiology