Illustrating examples of data collected about patients, mothers and fathers at timepoints during the Surgical-PEARL study
| Data | Source | |
| Antenatal | Pregnancy booking details Antenatal care records Pregnancy complications Antenatal therapies Antenatal imaging for example, ultrasound, MRI | MN |
| Maternal/paternal demographics Maternal/paternal socioeconomics Maternal/paternal health Maternal/paternal household details Maternal/paternal family history Maternal/paternal alcohol/drug/cigarette use Maternal/paternal environmental factors | MQ PQ MN | |
| Delivery | Indication, mode and gestation Birth weight and centile Umbilical cord blood pH and base excesses | MN |
| Childhood | NICU/PICU Diagnoses Surgical details Postoperative complications Imaging | MN |
| Follow-up | Quality of life Health Postoperative complications Healthcare utilisation | FUQ HES MN |
FUQ, follow-up questionnaire; HES, hospital episode statistics; MN, medical notes; MQ, maternal questionnaire; NICU, neonatal intensive care unit; PICU, paediatric intensive care unit; PQ, paternal questionnaire; Surgical-PEARL, Surgical Paediatric congEnital Anomalies Registry with Long term follow-up.