AREST CF: Demographics

Group CF 0 – 2 years and preschool (3 – 6 years) Non-CF Bronchoscopy/ BAL Non-CF lung function preschool
Wave W1 W2 W3 W4 W5 W6 W7 W8 W9 W10 N/A Screening Visit 1 Visit 2 Visit 3 Visit 4 (optional)
Age 2 – 4 months 1 year 2 years 3 years 3.5 years 4 years 4.5 years 5 years 5.5 years 6 years 0 – 6 years 3 – 6 years 3 – 6 years Visit 1 + 6 months Visit 1 + 12 months Visit 3 + 12 months
Year 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2010 – ongoing 2014 – ongoing 2014 – ongoing 2014 – ongoing 2014 – ongoing 2014 – ongoing
Age/DOB P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:SDV C Fam
Ethnicity P:SDV BM BF
Sex P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:SDV C Fam
Postcode M
Visit Screening/ enrolment Visit 1A Baseline Visit 1B Visit 2 Visit 3 Visit 4 Visit 5A Visit 5B Phone interviews (weekly)
Age (3 m ± 1m) (4 m ± 1m) Within 2 weeks of visit 1A (6 m ± 1m) (8 m ± 1m) (10 m ± 1m) (12 m ± 1m) Within 2 weeks of visit 5A Weekly
Year 2013 – 2016 2013 – 2016 2013 – 2016 2013 – 2017 2013 – 2017 2013 – 2017 2014 – 2017 2014 – 2017 2013 – 2017
No data
Group CF school age (7 – 9 years) Non-CF lung function school age
Wave W1 W2 W3 W4 W5 Screening Visit 1 Visit 2 Visit 3
Age 7 years 7.5 years 8 years 8.5 years 9 years 7 – 9 years 7 – 9 years Visit 1 + 6 months Visit 1 + 12 months
Year 2013 – ongoing 2013 – ongoing 2013 – ongoing 2013 – ongoing 2013 – ongoing 2016 – ongoing 2016 – ongoing 2016 – ongoing 2016 – ongoing
Age/DOB P:SDV C
P:CFQ-R Pr
S:CFQ-R		 P:SDV C
P:CFQ-R Pr
S:CFQ-R		 P:SDV C
P:CFQ-R Pr
S:CFQ-R		 P:SDV P:SDV P:SDV P:SDV
Education (level completed, current study status) P:CFQ-R Pr P:CFQ-R Pr P:CFQ-R Pr
Employment status/occupation P:CFQ-R Pr P:CFQ-R Pr P:CFQ-R Pr
Ethnicity P:CFQ-R C
S:CFQ-R		 P:CFQ-R C
S:CFQ-R		 P:CFQ-R C
S:CFQ-R
Marital/relationship status P:CFQ-R Pr P:CFQ-R Pr P:CFQ-R Pr
Sex P:CF RSQ
S:CFQ-R		 P:CF RSQ
S:CFQ-R		 P:CF RSQ
S:CFQ-R
Respondent information (relationship to child) P:CFQ-R Pr P:CFQ-R Pr P:CFQ-R Pr

Featured measurements

CF RSQ: CF Respiratory Symptom Questionnaire
CFQ-R: Cystic Fibrosis Questionnaire - Revised

Notes

0 – 6 years

The CF RSQ was developed by the AREST CF team and collects information about the child’s health (cough, sputum, respiratory tract infection, admissions, exercise and medications) in the preceding three months.

7 – 9 years

The CF RSQ was developed by the AREST CF team and collects information about the child’s health (cough, sputum, respiratory tract infection, admissions, exercise and medications) in the preceding three months.

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
X 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)