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
Changes in medications O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ
Comments about respiratory health O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ
Reason for clinic visit O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ O:CF RSQ
Mode of CF presentation
(e.g. newborn screening,
failure to thrive, family history,
malabsorption)
M
Date of CF presentation M
Symptoms at CF diagnosis M
CF screening tests
(immunoreactive trypsin,
genetic, sweat)
M
Family history of CF P:SDV
Prophylactic antibiotic use information
(current symptoms,
current prophylaxis,
history of antibiotic use,
antibiotic use following
bronchoalveolar lavage)
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
Coughing 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 P:RSQ P:RSQ P:RSQ P:RSQ
Sputum 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
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
Changes in medications O:CF RSQ O:CF RSQ O:CF RSQ
Comments about respiratory health O:CF RSQ O:CF RSQ O:CF RSQ
Reason for clinic visit O:CF RSQ O:CF RSQ O:CF RSQ
CF related quality of life P:CFQ-R
S:CFQ-R
P:CFQ-R
S:CFQ-R
P:CFQ-R
S:CFQ-R
CF symptoms (including frequency of respiratory, digestive and sleeping difficulties) P:CFQ-R
S:CFQ-R
P:CFQ-R
S:CFQ-R
P:CFQ-R
S:CFQ-R
Coughing P:CF RSQ P:CF RSQ P:CF RSQ P:RSQ P:RSQ P:RSQ
Sputum P:CF RSQ P:CF RSQ P:CF RSQ

Featured measurements

CF RSQ: CF Respiratory Symptom Questionnaire
CFQ-R: Cystic Fibrosis Questionnaire - Revised
RSQ: Respiratory Symptom Questionnaire
SDV: Study Devised Variable

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.

The RSQ was developed by the AREST CF team for non-CF participants.

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.

The RSQ was developed by the AREST CF team for non-CF participants.

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)