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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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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 |
Description |
Size |
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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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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 |
Description |
Size |
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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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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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No files could be found.
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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No files could be found.
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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| # |
Name |
Description |
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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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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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PIPARI
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PIPARI is a regional cohort consisting of infants born in Turku University Hospital between 2001 and 2006 at very low birth weight or very preterm.
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Countries
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Geographical Area
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Southwest Finland
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VPT/VLBW Group Inclusion Criteria
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Infants born in Turku university hospital between January 2001 and December 2006. Inclusion criteria were 1) infant’s birth weight ≤1500 grams (VLBW), and after April 2004, infant’s birth weight ≤1500 grams or gestational age below 32 weeks (VPT), 2) infant’s parents spoke and understood written Finnish or Swedish, and 3) families lived inside the hospital catchment area.
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Control Group Inclusion Criteria
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Full term infants born in Turku university hospital between 11/2001 to 12/2003. The parents of first boy and girl born in each week was asked to take part in the study. If they refused, the parents of next boy/girl were asked. Inclusion criteria were 1) birth weight ≥-2 SD according to age and gender specific Finnish growth charts 2) gestational age ≥37 weeks at birth 3) the family lived inside the hospital catchment area 4) the child was not admitted to neonatal care during the first week of life 5) family was Finnish or Swedish speaking.
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VPT/VLBW Group Exclusion Criteria
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Infants with major congenital anomalies or syndromes or chromosomal anomalies were excluded.
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Control Group Exclusion Criteria
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1) congenital anomalies or syndromes 2) mothers self-reported use of illicit drugs or alcohol during the pregnancy.
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Supplementary Information
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Controls were recruited right after birth before discharge from maternity ward in the beginning of the data collection period. Same group was used at each age.
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PIPARI cohort
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Overview
At 5 years of age, participants completed the short form of the Wechsler Preschool and Primary Scale of Intelligence – Revised (WPPSI-R) including the subtests Information, Sentences, Arithmetic, Block Design, Geometric Design and Picture Completion and the full scale intelligence quotient (FSIQ), verbal intelligence quotient (VIQ) and performance intelligence quotient (PIQ) were estimated. The NEPSY II Developmental Neuropsychological test was administered by a trained psychologist. Parents also completed the Five to Fifteen questionnaire to assess the participants' development and behavioural and socioemotional problems.
Three counting tests were used to assess participants' counting ability (counting of disarranged objects, number sequence production and number sequence elaboration) and the Test of Early Mathematics Ability (TEMA 3) was used to evaluate recognition of number symbols. The Spontaneous focusing on numerosity, SFON imitation tasks were also used to assess development of numerical skills. The Boston Naming Test was also used to assess naming ability and language processing skills in a subset of the cohort
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Start Date
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2006
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End Date
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2011
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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 |
|
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| Invited |
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| Assessed |
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5 Year Follow Up
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255
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Finland |
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SwissNeoNet
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The SwissNeoNet registry collects data on all infants born between 22+0 and 31+6 weeks' GA in 20 neonatal intensive- and intermediate-care units across Switzerland. The data in SwissNeoNet encompass information about the care and outcomes of these infants, including antenatal and maternal characteristics, perinatal factors, and long-term outcomes at 2 years and 5 years of age for children born extremely preterm (EPT, 22+0 to 27+6 weeks' GA).
This population includes all liveborn infants who were admitted to a participating Swiss neonatal care unit from 1 January 2000 to 31 December 2024.
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Countries
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Geographical Area
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National
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VPT/VLBW Group Inclusion Criteria
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Liveborn infants born between 22+0 to 31+6w GA OR below 1500g birthweight; either inborn OR outborn and admitted to a unit within 28 days after birth
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VPT/VLBW Group Exclusion Criteria
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Stillborn infants, infants born <22w GA
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No files could be found.
Swiss Neonatal Network 2000-2024
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Overview
The Follow-Up 5 (FU5) dataset contains information on growth measures, healthcare utilization/interventions given, and neurodevelopmental outcomes of EPT children at approx. 5 years of age. This dataset includes patients born between 1 January 2000 to approx. 31 December 2019. Note that VPT children were not invited to participate in FU5.
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Type of Data Collection Event
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Follow-up
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Start Date
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2000-01
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End Date
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2024-12
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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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Corrected Age
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VPT/VLBW Group |
Control Group |
| Survived |
|
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| Invited |
|
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| Assessed |
4892
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FU5 SwissNeoNet 2000-2024
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21515
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Switzerland |