Year ≥ 2011 ≥ 2012 ≥ 2014 ≥ 2020
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)
Supplementary COVID wave
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 3 mths-17 years
Family history of cleft palate P:SDV Fam P:SDV Fam
General physical health  P:SDV C P Pa
P:PedsQL-IS
P:SDV C P Pa
P:PedsQL-IS
P:SDV C P Pa
P:PedsQL-4.0
P:SDV C P Pa
P:PedsQL-4.0
P:SDV C P Pa
P:PedsQL-4.0
P:AQoL-4D S:PedsQL-W
S:PedsQL-4.0
P:AQoL-4D
P:CRISIS P C
Health-related quality of life  P:PedsQL-IS
P:PedsQL-FIM P Fam
 P:PedsQL-IS
P:PedsQL-FIM P Fam
 P:PedsQL-4.0
P:PedsQL-FIM P Fam
 P:PedsQL-4.0
P:PedsQL-FIM P Fam
 P:PedsQL-4.0
P:PedsQL-FIM P Fam
P:AQoL-4D
P:PedsQL-MFS
S:PedsQL-4.0
S:CHU9D
P:AQoL-4D
General wellbeing S:PedsQL-W
Living arrangements/Household composition P:SDV C P P:SDV C P P:SDV C P P:SDV C P P:SDV C P P:SDV C P   P:CRISIS P
Health services utilisation P:SDV P:SDV P:SDV 1
Housing ownership and tenure     P:CRISIS P
Medical diagnosis     P:CRISIS 2
COVID-19 infection     P:CRISIS P C Fam 2
Current education     P:CRISIS
Support services utilisation     P:SDV
Access to health services     P:SDV 1
Quality of health care     P:SDV 1
Health behaviours     P:CRISIS

Featured measurements

AQoL-4D: Assessment of Quality of Life – 4D
CHU9D: Child Health Utility 9D
CRISIS: CoRonavIruS Health Impact Survey (various instruments)
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 Inventory – General Well-Being Scale
SDV: Study Devised Variable

Notes

1 Utilisation, access and quality of the following services: Audiology, speech and language, psychologist, general practitioner, ear, nose and throat services, genetics service and other health professionals

2 Additional study-derived response items added

Legend

A = Administration report abstraction
C = Index child report (reporting on others)
L = Linkage (to other databases)
M = Medical records data abstraction
O = Observation/direct assessment
N = Nurse report
P = Parent/primary caregiver report
Pe = Peer report
S = Self report
T = Teacher report
X = Undefined
X BF = Pertaining to biological father
X BM = Pertaining to biological mother
C = Pertaining to index child
X F = Pertaining to father
X Fam = Pertaining to family
X G = Pertaining to grandparent(s)
X M = Pertaining to mother
X P = Pertaining to parent(s)
X Pa = Pertaining to partner
X Pe = Pertaining to peers
X Pr = Pertaining to primary caregiver
X Si = Pertaining to sibling(s)