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
Biomarker analysis
(alpha 1-acid glycoprotein)
X X X X X X X
Biomarker analysis
(urine)
X X X X X X
Microbiome analysis
(bronchoalveolar lavage)
X X X X X X X X
Microbiome analysis
(faeces) 1
X X
Infection assessment
(bronchoalveolar lavage,
sputum if collected, oropharyngeal swab)
X X X X X X X X
Inflammation assessment
(bronchoalveolar lavage, cytokines)
X X X X X X X X
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
Microbiome analysis
(oropharyngeal swab)
X X
Microbiome analysis
(bronchoalveolar lavage)
X X
Microbiome analysis
(faeces)
X X X X X X
Microbiome analysis
(viral, nasal swab)
X X X X X X
Infection assessment
(bronchoalveolar lavage, nasal swab)
X X X X X X X X
Inflammation assessment
(bronchoalveolar lavage, cytokines)
X X
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
Microbiome analysis (sputum) X X X
Infection assessment (sputum) X X X
Inflammation assessment (sputum, cytokines) X X X

Notes

0 – 6 years

1 A stool sample is collected at time of CF diagnosis (prior to enrolment into study), and will be requested (where possible) every 3 months throughout the first year of life.

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)