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Cohort profile: Effective Perinatal Intensive Care in Europe (EPICE) very preterm birth cohort.
Zeitlin J, Maier RF, Cuttini M, Aden U, Boerch K, Gadzinowski J, et al.; Effective Perinatal Intensive Care in Europe (EPICE) research group. 
International Journal of Epidemiology. 2020 Feb 7.

WHY WAS THE COHORT SET UP? This cohort was set up to investigate the use of evidence-based interventions for prenatal and postnatal care of infants born very preterm (VPT) and explore the associations between evidence-based care and their health and developmental outcomes. 

WHO IS IN THE COHORT? The EPICE cohort is a geographically defined study of stillbirths and live births from 22+0 to 31+6 weeks of gestation in 19 European regions. 

HOW OFTEN HAVE THEY BEEN FOLLOWED UP? Perinatal data were collected to discharge home from hospital or into long-term institutional care. At 2 years of age, a parental questionnaire was used to collect information about socio-demographic characteristics, the child's health and development and the child's use of health care services. Between 5 and 6 years of age, follow-up was based on a parental questionnaire and, for children born at <28 weeks of gestation, a neurodevelopmental assessment. Plans for future follow-up aim for contact with families when the children are 11 or 12 years old. 

WHAT HAS BEEN MEASURED? Perinatal data on maternal characteristics, pregnancy complications, birth and the neonatal course were abstracted from medical records in obstetric and neonatal units using pretested standardized questionnaires with common definitions based on a previous study. At 2 years of corrected age, parents filled in a questionnaire on health, neurodevelopmental outcomes, growth, health service use and socio-demographic information. At 5 years, the Health and Wellbeing study used a parent-report questionnaire to assess health and child development, health service use, healthcare related costs, satisfaction with healthcare services, family wellbeing and socio-demographics. The Neurodevelopmental Assessment Study carried out neurodevelopmental assessments at 5 years of age for children born before 28 weeks of gestation. 

See article here: International Journal of Epidemiology (2020)