title: Birth defect registries: the vagaries of management- the British Columbia and Alberta case histories.
abstract: Birth defect surveillance is of increasing interest and importance, especially since the discovery that folic acid fortification or supplementation can prevent a large proportion of neural tube defects. Funding is a constant problem, but management or policy can also lead to changes in ascertainment and quality, and even to the threat of actual closure. This is a case study of 2 Canadian registries-British Columbia and Alberta-from an historical point of view. The lessons here are applicable to many registries or surveillance systems. To succeed, 4 things must be in place-stated objectives of the program, funding (preferably government, but may start with a grant or foundation), support from public health departments, and someone to champion the cause. The importance of medical consultants cannot be overstated.
authors.forename: R Brian
authors.initials: RB
authors.lastname: Lowry
authors.forename: Tanya
authors.initials: T
authors.lastname: Bedard
mesh_terms: D000416:Alberta / Q000453:epidemiology; D001955:British Columbia; D000013:Congenital Abnormalities; D019992:Databases as Topic / Q000266:history / Q000458:organization & administration*; D049673:History, 20th Century; D006801:Humans; D011159:Population Surveillance; D012042:Registries