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UA_EPIBEL
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During a 2-year period (January 1, 1999, to December 31, 2000), perinatal data of all inborn births with a GA between 22 and 26 completed weeks, ie, up to 26 weeks and 6 days' postmenstrual age, were collected in all perinatal centers in Belgium. During the same period, another 58 extremely preterm (EPT) infants with similar GA were admitted to the 19 centers after postnatal transfer within the first 24 hours. These outborn infants (16% of EPT infants admitted) are not included in additional analysis. Belgium has a population of ∼10 million people and nearly 115 000 annual births.
GA was defined as the best obstetric estimate using the information on the record form.
A standardized data set of 82 items, including demographic information about the mother and a large number of perinatal data until death, was used. Data were collected on all pregnancies with at least 1 fetus ≥22 weeks' GA showing signs of life at the onset of labor, resulting in a birth, death, or alive and whether admitted or not to the neonatal intensive care unit (NICU).
Full data collection was completed for all infants who were admitted to 1 of the 19 Belgian NICUs and for all infants who were still alive at the onset of labor in 14 of the 19 units. In the remaining 5 centers, data on nonadmitted neonates were not collected because of incomplete obstetric data or no access to the obstetric file.
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Countries
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Geographical Area
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All of Belgium
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VPT/VLBW Group Inclusion Criteria
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All inborn births between 22+0 and 26 + 6 completed weeks of gestation.
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Control Group Inclusion Criteria
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n/a
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VPT/VLBW Group Exclusion Criteria
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Outborn infants (16% of EPT infants admitted) are not included.
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Control Group Exclusion Criteria
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n/a
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UA EPIBEL Cohort
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Overview
At 11-15 years of age, participants from the Flemish (Dutch-speaking) Flanders region were assessed. Neurosensory impairment was assessed (motor impairment, cerebral palsy, visual impairment and auditory impairment).
Autism symptoms were evaluated using the Social Communication Questionnaire (SCQ) and Social Responsiveness Scale (SRS). Autism diagnoses were obtained using Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R), along with questions about pre-existing clinical autism diagnoses.
The Weschler Intelligence Scale for Children Third Edition (WISC-III) was used to assess cognitive function (the Similarities, Picture Concepts, Block Design, and Vocabulary subscales were used to calculate an IQ score). Language development was assessed using the Dutch version of the Clinical Evaluation of Language Fundamentals (CELF-IV-NL), maths processing speed was assessed using the Tempo-Test-Rekenen (TTR) and dyslexia was assessed using the Dyslexia Screening Test (DST).
Behavior was assessed using the ASEBA parent, teacher and self-report forms: Child Behavior Checklist (CBCL), Teacher Report Form (TRF), and Youth Self Report form (YSR). The Dutch version of the Disruptive Behavior Disorders Rating Scales (DBDRS) the Vragenlijst voor gedragsproblemen bij kinderen 6-16 jaar (VvGK) was also completed. A questionnaire was also completed on medical and psychological diagnosis and treatment history, and academic achievement.
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Supplementary Information
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Subset of cohort from Flanders region (Dutch Speaking).
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Start Date
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2011
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End Date
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2014
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Data sources
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Questionnaires
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Cognitive measures
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Files
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Name |
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No files could be found.
Participants
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Age at Data Collection Event (years)
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13
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VPT/VLBW Group |
Control Group |
| Survived |
175
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| Invited |
79
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| Assessed |
53
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11-15 Year Follow Up
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525
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Belgium |
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EST 2002-2003
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Population based cohort consisting of all live births <1000g, <29 weeks of gestational age in maternity units within Estonia registered in Estonian Medical Birth register.
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Countries
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Geographical Area
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All of Estonia
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VPT/VLBW Group Inclusion Criteria
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all live births at <1000g, <29 completed weeks of gestation.
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Control Group Inclusion Criteria
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n/a
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VPT/VLBW Group Exclusion Criteria
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Stillborn
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Control Group Exclusion Criteria
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n/a
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EST 2002-2003 Cohort
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Overview
Children underwent a clinical assessment by a pediatrician, psychologist, speech therapist and physiotherapist at 5 years of age. The pediatrician examined the child, measured the child's weight, height, head and upper right arm circumference, the arterial blood pressure, and interviewed the mother about the disease history of the child by organ. Cognitive, linguistic and motor development were assessed using Kaufman Assessment Battery for Children 2nd Edition (KABC-II), Reynell Developmental Language Scales 3rd Edition (RDLS-III), Movement Assessment Battery for Children (Movement ABC). Questionnaires were sent to parents and teachers to assess child and family coping (COPE-D).
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Start Date
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2007
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End Date
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2008
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Data sources
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Questionnaires
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Cognitive measures
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Physical measures
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Files
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| # |
Name |
Description |
Size |
Actions |
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No files could be found.
Participants
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Age at Data Collection Event (years)
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5
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VPT/VLBW Group |
Control Group |
| Survived |
34
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| Invited |
34
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| Assessed |
33
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5 Year Follow Up
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80
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Estonia |
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EST 2007-2008
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Population based cohort - all live born very preterm infants born in 2007-2008 in maternity units within Estonia who were registered in Estonian Medical Birth register.
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Countries
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Geographical Area
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All of Estonia
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VPT/VLBW Group Inclusion Criteria
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For 2 year follow up: all live births at <32 completed weeks of gestation, born in 2007.
For 5 year follow up: live births at <29 completed weeks of gestation, <1000g, born in 2007-2008.
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Control Group Inclusion Criteria
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Term healthy infant matched with the study group by sex, age and birth hospital.
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VPT/VLBW Group Exclusion Criteria
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Stillborn
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Control Group Exclusion Criteria
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Illness and intensive care requirement within 1st week of life.
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Supplementary Information
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Inclusion criteria are different for 2 year and 5 year follow up, including the range of birth years.
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EST 2007-2008 Cohort
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Overview
At 5 years of age, a physical clinical assessment was carried out. Developmental and neurological outcomes were assessed using the Reynell Developmental Language Scales Third Edition (RDLS-III), Kaufman Assessment Battery for Children 2nd Edition (KABC) and Movement Assessment Battery for Children (Movement ABC). Parents and teachers also completed Movement ABC questionnaires, and the Edinburgh Depression Questionnaire was completed by the mother of participants. Sociodemographic and environmental exposures were identified using a parental questionnaire. Cardiovascular characteristics and blood biomarkers were also measured in subgroups of the cohort.
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Supplementary Information
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Cohort assessed at 2 years was all live births <32 completed weeks of gestation in 2007. This is different from the cohort assessed at 5 years which included those born at <29 completed weeks of gestation in 2007-8.
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Start Date
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2012
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End Date
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2014
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Data sources
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Questionnaires
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Cognitive measures
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Physical measures
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Biosamples
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Data sources - Biosamples
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Files
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No files could be found.
Participants
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Age at Data Collection Event (years)
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5
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VPT/VLBW Group |
Control Group |
| Survived |
55
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| Invited |
55
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| Assessed |
53
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41
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5 Year Follow Up
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360
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Estonia |
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EPIPAGE 2
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Population based cohort - All births (live births, still births and terminations of pregnancy) in maternity units within the regions.
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Countries
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Geographical Area
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25 regions: 21 of the 22 metropolitan regions, and 4 overseas regions of France.
Alsace, Aquitaine, Auvergne, Basse-Normandie, Bretagne, Bourgogne, Centre-Val de Loire, Champagne-Ardenne, Corse, Franche-Comté, Haute-Normandie, Île-de-France, Languedoc-Roussillon, Limousin, Lorraine, Midi-Pyrénées, Nord-Pas-de-Calais, PACA, Pays de la Loire, Picardie, Rhône-Alpes, Guyane, Martinique, La Réunion, and Guadeloupe.
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VPT/VLBW Group Inclusion Criteria
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All infants (live born, stillborn) and all terminations of pregnancy between 22 and 31 completed weeks of gestation
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a sample of moderate preterm births (all births and late terminations) at 32–34 weeks. Recruitment between March 28, 2011 and December 31, 2011.
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Control Group Inclusion Criteria
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Controls groups could be selected from the Elfe study, a contemporary French cohort with a 20-year planned follow-up of 18 500 children born at or near term in 2011, in 344 randomly selected public and private maternity units in metropolitan France (www.elfe-france.fr).
600 infants born at term (>=37 weeks) are recruited from the Elfe study as a control group at the 5 and a half year follow up.
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VPT/VLBW Group Exclusion Criteria
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none
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Control Group Exclusion Criteria
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none
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EPIPAGE 2 Cohort
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Overview
At one year of age (corrected age), a questionnaire was sent to the parents to investigate the participant's anthropometric measurements (height, weight, head circumference), hospital admissions and contacts with healthcare professionals, respiratory illness, skin problems, hearing, vision problems, neurological problems, other health problems, immunisations and medication, and parental feelings/worries about the participant's health. Parents also completed questions on the development, sleep, diet and breastfeeding of the infant.
The second part of the questionnaire collected data on childcare arrangements, parental smoking, living arrangements, place of residence, parental nationality and country of birth, languages spoken, level of education, employment, time off or leaving employment due to participant's health problems, income, welfare benefits, and health insurance.
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Type of Data Collection Event
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Follow-up
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Supplementary Information
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Full cohort assessed.
Among 4467 infants discharged alive from NICU, parents of 155 refused the whole follow-up (3%).
22 children died before one year of age
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Start Date
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2012-04
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End Date
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2013-03
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Data sources
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Questionnaires
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Cognitive measures
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Physical measures
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Files
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| # |
Name |
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Actions |
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No files could be found.
Participants
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Age at Data Collection Event (years)
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1
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Corrected Age
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VPT/VLBW Group |
Control Group |
| Survived |
4445
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| Invited |
4290
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| Assessed |
3841
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0
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1 Year Follow up
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5170
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France |
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ACTION
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The ACTION population comprises all births in FVG, Tuscany, Marche and Lazio. Births in all hospitals with NICUs plus transferred infants in Calabria and Lombardy.
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Countries
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Geographical Area
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ACTION 1: Lombardy, Friuli Venezia Giulia (FVG), Tuscany, Marche, Lazio and Calabria (6 regions)
ACTION 2: FVG, Tuscany, Marche, Lazio and Calabria (5 regions)
ACTION 3: FVG, Tuscany, Lazio (3 regions)
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VPT/VLBW Group Inclusion Criteria
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All live and still births between 22+0 and 31+6 weeks of gestation in FVG, Tuscany, Marche and Lazio. Live births in Calabria.
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Control Group Inclusion Criteria
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Italian 2-years children born at term recruited in FVG, Tuscany, Marche, Lazio and Calabria.
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VPT/VLBW Group Exclusion Criteria
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none
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Control Group Exclusion Criteria
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Infants born preterm and those from foreign mothers.
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No files could be found.
ACTION Cohort
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Overview
Perinatal assessment included collection of data on maternal obstetric history and prenatal care, pregnancy complications, delivery room care, pregnancy outcomes, infant condition and characteristics at birth, neonatal morbidity,medical treatment during the stay in the NICU, conditions at 36 weeks postmenstrual age and at discharge from the NICU, hospital admissions and transfers, infant survival, and maternal sociodemographic factors.
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Type of Data Collection Event
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Perinatal
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Start Date
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2003-07
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End Date
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2005-06
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Data sources
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Questionnaires
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Physical measures
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Files
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| # |
Name |
Description |
Size |
Actions |
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No files could be found.
Participants
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Age at Data Collection Event (years)
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0
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Corrected Age
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VPT/VLBW Group |
Control Group |
| Survived |
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| Invited |
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| Assessed |
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Perinatal Information
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VPT/VLBW Group |
Control Group |
| Total Births |
2493
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| Terminations of Pregnancy |
281
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| Still Births |
359
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| Live Births |
1853
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| Admitted to NICU |
1818
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| Survived to Discharge |
1466
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Perinatal Assessment
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2493
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Italy |
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EPIPAGE 1
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Population based cohort consisting of all births (live births, still births and termination of pregnancy) in all maternity units in the 9 regions.
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Countries
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Geographical Area
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Alsace, Franche-Comté, Languedoc-Roussillon, Lorraine, Midi-Pyrénées, Pays de la Loire, Haute Normandie, Nord-Pas-de-Calais, Paris and its immediate suburbs (9 regions).
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VPT/VLBW Group Inclusion Criteria
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All infants live born or stillborn and all terminations of pregnancy between 22 and 32 completed weeks of gestation (recruited between January 1 and December 31, 1997)
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a sample of moderate preterm births (births and terminations of pregnancy) born between 33 and 34 completed weeks (2 month recruitment - april and october, 1997)
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A sample of infants live born between 22 and 26 weeks of gestation, in 8 of the 9 regions between January 1 and December 31, 1998.
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Control Group Inclusion Criteria
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Infants born alive between 39 and 40 completed weeks (one week recruitment in 1997).
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VPT/VLBW Group Exclusion Criteria
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none
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Control Group Exclusion Criteria
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none
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No files could be found.
EPIPAGE 1 Cohort
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Overview
Data on pregnancy, delivery and care prior to transfer to the neonatal unit were collected from maternal obstetric records and the obstetric team. This included data on pregnancy, multiples, previous pregnancies, maternal medical history, fertility treatment, assessments and clinical investigations during pregnancy, pregnancy complications, medical treatment during pregnancy, hospital admissions during pregnancy, fetal health, congenital anomalies, pregnancy outcomes, labour and delivery, management of delivery, clinical indicators at birth, management of infant in delivery room, summary of mother's stay in maternity unit, and summary of hospital stay (for control infants not admitted to NICU).
Data on neonatal care were collected from neonatal records and the neonatology team including information on first 12 hours of life, details of all transfers between units, infant condition at admission to neonatal unit (including following subsequent transfer between neonatal units), neonatal morbidity, neonatal infections, screening tests and clinical assessments performed, medical care and treatments received, nutrition, growth, visits of parents to the unit, discharge from hospital, details of infant death, follow up after discharge.
A questionnaire was also completed by the maternity unit where delivery took place including details of staffing, maternity unit environment and on-site facilities, types of transport used for perinatal transport, management of the mother and management of the newborn.
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Type of Data Collection Event
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Perinatal
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Start Date
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1997
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End Date
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1998
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Data sources
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Questionnaires
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Physical measures
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Files
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| # |
Name |
Description |
Size |
Actions |
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No files could be found.
Participants
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Age at Data Collection Event (years)
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0
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Corrected Age
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VPT/VLBW Group |
Control Group |
| Survived |
|
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| Invited |
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| Assessed |
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Perinatal Information
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VPT/VLBW Group |
Control Group |
| Total Births |
4664
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| Terminations of Pregnancy |
728
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| Still Births |
786
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| Live Births |
3150
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| Admitted to NICU |
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| Survived to Discharge |
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Perinatal Assessment
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3581
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France |
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EPICE
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All live and still births between 22+0 and 31+6 weeks in maternity units in 19 regions in 11 European countries during study period (April 2011-September 2012) .
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Countries
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Belgium
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Denmark
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Estonia
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France
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Germany
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Italy
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Netherlands
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Portugal
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United Kingdom
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Sweden
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Poland
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Geographical Area
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Belgium – Flanders, Denmark – Eastern Region, Estonia – Whole country, France – Nord-Pas-de-Calais, Burgundy, Île-de-France, Germany – Hesse, Saarland, Italy – Lazio, Emilia, Marche, Netherlands – East Central, Poland – Wielkopolska, Portugal – Northern, Lisbon, UK – Northern, East Midlands, Yorkshire and Humber, Sweden – Stockholm
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VPT/VLBW Group Inclusion Criteria
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All live and still births between 22 and 31 completed weeks of gestation.
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Control Group Inclusion Criteria
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n/a
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VPT/VLBW Group Exclusion Criteria
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none
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Control Group Exclusion Criteria
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n/a
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Supplementary Information
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Follow up of the cohort at 5 years of age in the SHIPS study
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EPICE Cohort
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Overview
Perinatal data were collected from obstetric and neonatal medical records using a pretested standardised questionnaire. Data were collected on maternal and infant health characteristics, maternal sociodemographic characteristics, pregnancy complications, maternal obstetric and medical history, details of pregnancy, interventions during pregnancy, labour and delivery, pregnancy outcomes, neonatal morbidity and medical treatment, congenital anomalies, and nutrition during the neonatal period (e.g. breastfeeding). Maternal and infant hospital admission history, and neonatal outcomes (death or discharge from the neonatal unit) were also recorded.
Additionally, a survey of maternity and delivery units was carried out. Data were collected on the characteristics and practices of the maternity and neonatal units such as policies, protocols, unit activity levels, and decision making processes etc.
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Type of Data Collection Event
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Perinatal
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Supplementary Information
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Live births: 7900, Survived to discharge: 6972
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Start Date
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2011
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End Date
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2012
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Data sources
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Questionnaires
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Physical measures
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Files
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| # |
Name |
Description |
Size |
Actions |
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No files could be found.
Participants
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Age at Data Collection Event (years)
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0
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Corrected Age
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VPT/VLBW Group |
Control Group |
| Survived |
|
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| Invited |
|
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| Assessed |
10329
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Perinatal Information
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VPT/VLBW Group |
Control Group |
| Total Births |
10329
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| Terminations of Pregnancy |
815
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| Still Births |
1614
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| Live Births |
7900
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| Admitted to NICU |
7637
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| Survived to Discharge |
6792
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Perinatal Assessment
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10329
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Belgium, Denmark, Estonia, France, Germany, Italy, Netherlands, Portugal, United Kingdom, Sweden, Poland |
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NTNU LBW Life
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Single centre cohort, all VLBW infants <1500g admitted to the NICU at St. Olavs Hospital, Trondheim University Hospital.
Control group were all children born to mothers of a 10% random sample in the Trondheim region in the same years as the VLBW group.
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Countries
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Geographical Area
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Mid-Norway (Counties of South and North Trøndelag, Møre and Romsdal, City of Trondheim)
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VPT/VLBW Group Inclusion Criteria
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VLBW: All infants admitted to the NICU at St. Olavs Hospital, Trondheim University Hospital ≤ 1500 g.
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Control Group Inclusion Criteria
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All babies born at term with weight >10th percentile in the Trondheim region in 1986-1988. A 10% random sample was selected for follow up.
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VPT/VLBW Group Exclusion Criteria
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Congenital anomalies and syndromes.
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Control Group Exclusion Criteria
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Congenital anomalies and syndromes.
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No files could be found.
NTNU LBW Life Cohort
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Overview
Information on perinatal variables was collected retrospectively from hospital records. Data collected around birth included birth weight, gestational age, head circumference, APGAR scores, days in NICU, days on mechanical ventilator, intraventricular hemorrhage (IVH) and maternal age.
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Type of Data Collection Event
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Perinatal
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Supplementary Information
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Data of VLBW cohort retrieved from hospital records retrospectively, thus included all live-born infants in the cohort. Data of control group prospectively collected in a multicenter study.
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Start Date
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1986
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End Date
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1988
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Data sources
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Data sources - Administrative databases
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Files
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| # |
Name |
Description |
Size |
Actions |
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No files could be found.
Participants
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Age at Data Collection Event (years)
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0
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Corrected Age
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VPT/VLBW Group |
Control Group |
| Survived |
88
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| Invited |
121
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| Assessed |
121
|
120
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Perinatal Information
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VPT/VLBW Group |
Control Group |
| Total Births |
121
|
120
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| Terminations of Pregnancy |
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| Still Births |
|
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| Live Births |
121
|
120
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| Admitted to NICU |
121
|
4
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| Survived to Discharge |
88
|
120
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Perinatal Assessment
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121
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Norway |