Year ≥ 2011 ≥ 2012 ≥ 2014
Wave 1 – Enrolment 2 – Assessment (researcher home visit) plus 5-7 year questionnaires (see Wave 1 for content) 3 – Assessment (researcher home visit) plus 9-12 year questionnaires (see Wave 1 for content)
Age 1-12 months 13-24 months 2-4 years 5-7 years 8-12 years Enrolment supplement (from 13 months) 5-7 years 9-12 years
Family history of cleft palate P:SDVFAM P:SDVFAM
General physical health  P:SDVP
P:PedsQL-IS
 P:SDVP
P:PedsQL-IS
 P:SDVP
P:PedsQL-4.0
P:SDVP
P:PedsQL-4.0
P:SDVP
P:PedsQL-4.0
P:AQoL-4DR S:PedsQL-WC
S:PedsQL-4.0C
P:AQoL-4DR
Health-related quality of life  P:PedsQL-IS
P:PedsQL-FIMFAM
 P:PedsQL-IS
P:PedsQL-FIMFAM
 P:PedsQL-4.0
P:PedsQL-FIMFAM
 P:PedsQL-4.0
P:PedsQL-FIMFAM
 P:PedsQL-4.0
P:PedsQL-FIMFAM
P:AQoL-4DR
P:PedsQL-MFS
S:PedsQL-4.0C
S:CHU9DC
P:AQoL-4DR
General wellbeing S:PedsQL-WC
Health services utilisation P:SDVC P:SDVC

P – Primary caregiver report
P:XXR – Primary caregiver report pertaining to primary caregiver
P:XXP – Primary caregiver report pertaining to primary caregiver’s partner
P:XXC – Primary caregiver report pertaining to child
P:XXFAM – Primary caregiver report pertaining to family
P:XXS – Primary caregiver report pertaining to siblings
S:XXC – Self report by child
O – Observation/direct assessment

SDV: Study Devised Variable
AQoL-4D: Assessment of Quality of Life 4D
CHU9D: Child Health Utility 9D
PedsQL-4.0: Pediatric Quality of Life Inventory – 4.0 Generic Core Scales
PedsQL-FIM: Pediatric Quality of Life Inventory – Family Impact Module
PedsQL-IS: Pediatric Quality of Life Inventory – Infant Scales
PedsQL-MFS: Pediatric Quality of Life Inventory – Multidimensional Fatigue Scale
PedsQL-W: Pediatric Quality of Life – General Well-Being Scale