AREST CF: Condition specific information
| 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 QuestionnaireCFQ-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 |
| 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) |