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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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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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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 2 years of age (corrected age) the parents of the participant completed a questionnaire on anthropometric measurements (height, weight, head circumference), use of aids and equipment, hospital admissions, visits to health professionals, specialist follow up care received, sleep, feeding and diet. Parents also provided information on place of residence, living arrangements, childcare arrangements, parental health (health related QoL - questions from SF-36), worries about child's health/development, parental employment, and details of parental employment and shift work before/during pregnancy.
Parents completed the Ages and Stages 24 Month Questionnaire to assess global development, the French version of the MacArtur Bates Communicative Development Inventory - Les Inventaires Français du Développement Communicatif (IFDC) to assess language development, and the Modified Checklist for Autism in Toddlers (M-CHAT) to assess autism symptoms.
A questionnaire was sent to the participant's physician (general practitioner, pediatrician etc) to be completed during an examination at 2 years. Details of height, weight, psychomotor development, neurological problems, hearing problems, vision problems, respiratory problems, skin problems, follow up care for patent ductus arteriosus, current medical treatments, medications and immunisations, and follow up by other medical professionals were collected.
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Supplementary Information
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Full cohort assessed.
Death between 1 and 2 years: 2
Parental refusals between 1 and 2 years: 89
At least one assessment : 3809 (91% of eligibles)
Parental questionnaire completed : 3689 (88% of eligibles)
Medical questionnaire completed : 3599 (86% of eligibles)
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Start Date
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2013-04
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End Date
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2014-03
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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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No files could be found.
Participants
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Age at Data Collection Event (years)
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2
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VPT/VLBW Group |
Control Group |
| Survived |
4443
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| Invited |
4199
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| Assessed |
3809
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2 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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ACTION Cohort
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Overview
At 2 years of age, participants attended a hospital examination to assess general health. This included assessment of health conditions, medication usage at time of follow up, vaccination history, surgical history and hospital admissions since discharge from neonatal unit, and respiratory infections since discharge. Participants also underwent screening for neurosensory impairments including psychomotor functioning, presence of CP, visual and hearing function and use of aids.
Parents of the participant completed a postal questionnaire consisting of the Parent Report of Children's Abilities Revised (PARCA-R) and the Bates Infant Characteristics Questionnaire (ICQ) to assess the development and temperament of the child.
A structured telephone interview with the parents of the participant was carried out to collect information on parental education and profession, maternal physical and mental health, difficulties related to the birth of the preterm child, information about family life, child health, sleep, feeding, and stressful life events since the birth of the child (such as death or disease of loved ones, divorce, job loss, economical and legal problems). The General Health Questionnaire 12 item version (GHQ-12) was used to measure current maternal mental health at the time of interview.
Four participating hospitals also used the BSID-II as a routine screening tool. This data was also used in the validation process for the Italian translation of the PARCA-R.
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Start Date
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2005-09
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End Date
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2007-10
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Data sources
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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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2
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VPT/VLBW Group |
Control Group |
| Survived |
1466
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| Invited |
1406
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| Assessed |
1196
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446
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2 Year Follow Up
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2493
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Italy |
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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
EPICE participants were followed up at 2 years of corrected age via a postal questionnaire completed by parents. Neurodevelopment was assessed using the Parent Report of Children's Abilities - Revised for preterm infants (PARCA-R) questionnaire, except in France where the Ages and Stages Questionnaire (ASQ) was used. Additional questions were included on walking, feeding, sight and hearing. Parents also completed questions on the health of the child, healthcare resource utilisation and follow up care. Height, weight and head circumference were provided based on the latest measurements recorded by a health professional in the child's health record book. Additionally, details on breastfeeding, living arrangements, family structure, childcare and socioeconomic status and demographic information were collected.
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Supplementary Information
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Full cohort assessed. Age was corrected for prematurity.
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Start Date
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2013
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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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Files
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| # |
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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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2
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VPT/VLBW Group |
Control Group |
| Survived |
6761
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| Invited |
6761
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| Assessed |
4426
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2 Year Follow Up
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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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NTNU LBW Life Cohort
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Overview
At 5 years of age, participants underwent an examination to assess physical health, motor function and neurodevelopment, and quantitative cerebral MRI.
Cognitive development was assessed using the Wechsler Preschool and Primary Scale of Intelligence (WPPSI). Yale Children's Inventory (YCI) was used to assess attentional deficits and learning difficulties. Physical and motor assessments included a neuropediatric examination (based on Touwen, 1979), anthropometric measurements (height, weight, head circumference, upper arm circumference, triceps and subscapular skinfold thickness). Three subscales from Peabody Developmental Motor Scales were also administered (Eye/hand coordination, balance, and locomotor).
Quantitative MRI was performed to measure volumes for a number of brain structures (2D T1 weighted inversion recovery, T2 weighted spin echo sequences at 1.5 T).
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Supplementary Information
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Subset Born 1988 + 5 born 1987.
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Start Date
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1992-05
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End Date
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1994-12
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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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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 |
45
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| Invited |
44
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| Assessed |
29
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96
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5 Year Follow Up
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121
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Norway |