title: The registry and follow-up of complex pediatric therapies program of Western Canada: a mechanism for service, audit, and research after life-saving therapies for young children.
abstract: Newly emerging health technologies are being developed to care for children with complex cardiac defects. Neurodevelopmental and childhood school-related outcomes are of great interest to parents of children receiving this care, care providers, and healthcare administrators. Since the 1970s, neonatal follow-up clinics have provided service, audit, and research for preterm infants as care for these at-risk children evolved. We have chosen to present for this issue the mechanism for longitudinal follow-up of survivors that we have developed for western Canada patterned after neonatal follow-up. Our program provides registration for young children receiving complex cardiac surgery, heart transplantation, ventricular assist device support, and extracorporeal life support among others. The program includes multidisciplinary assessments with appropriate neurodevelopmental intervention, active quality improvement evaluations, and outcomes research. Through this mechanism, consistently high (96%) follow-up over two years is maintained.
authors.affiliation: Department of Pediatrics, University of Alberta, Edmonton, AB, Canada T6G 2R3.
authors.forename: Charlene M T
authors.initials: CM
authors.lastname: Robertson
authors.forename: Reg S
authors.initials: RS
authors.lastname: Sauve
authors.forename: Ari R
authors.initials: AR
authors.lastname: Joffe
authors.forename: Gwen Y
authors.initials: GY
authors.lastname: Alton
authors.forename: Diane M
authors.initials: DM
authors.lastname: Moddemann
authors.forename: Patricia M
authors.initials: PM
authors.lastname: Blakley
authors.forename: Anne R
authors.initials: AR
authors.lastname: Synnes
authors.forename: Irina A
authors.initials: IA
authors.lastname: Dinu
authors.forename: Joyce R
authors.initials: JR
authors.lastname: Harder
authors.forename: Reeni
authors.initials: R
authors.lastname: Soni
authors.forename: Jaya P
authors.initials: JP
authors.lastname: Bodani
authors.forename: Ashok P
authors.initials: AP
authors.lastname: Kakadekar
authors.forename: John D
authors.initials: JD
authors.lastname: Dyck
authors.forename: Derek G
authors.initials: DG
authors.lastname: Human
authors.forename: David B
authors.initials: DB
authors.lastname: Ross
authors.forename: Ivan M
authors.initials: IM
authors.lastname: Rebeyka