|
ACTION
|
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.
-
Countries
-
-
Geographical Area
-
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)
-
VPT/VLBW Group Inclusion Criteria
-
All live and still births between 22+0 and 31+6 weeks of gestation in FVG, Tuscany, Marche and Lazio. Live births in Calabria.
-
Control Group Inclusion Criteria
-
Italian 2-years children born at term recruited in FVG, Tuscany, Marche, Lazio and Calabria.
-
VPT/VLBW Group Exclusion Criteria
-
none
-
Control Group Exclusion Criteria
-
Infants born preterm and those from foreign mothers.
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
ACTION Cohort
|
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.
-
Start Date
-
2005-09
-
End Date
-
2007-10
-
Data sources
-
-
Files
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Participants
-
Age at Data Collection Event (years)
-
2
|
VPT/VLBW Group |
Control Group |
| Survived |
1466
|
|
| Invited |
1406
|
|
| Assessed |
1196
|
446
|
2 Year Follow Up
|
2493
|
Italy |
|
UA_EPIBEL
|
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.
-
Countries
-
-
Geographical Area
-
All of Belgium
-
VPT/VLBW Group Inclusion Criteria
-
All inborn births between 22+0 and 26 + 6 completed weeks of gestation.
-
Control Group Inclusion Criteria
-
n/a
-
VPT/VLBW Group Exclusion Criteria
-
Outborn infants (16% of EPT infants admitted) are not included.
-
Control Group Exclusion Criteria
-
n/a
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
UA EPIBEL Cohort
|
Overview
Data were collected from hospital records using a standardised form. Data were collected on maternal sociodemographic information, maternal medical and obstetric history, pregnancy course, maternal transfers, pregnancy complications, treatment to maintain pregnancy, delivery, infant characteristics at birth, delivery room care, congenital anomalies, decisions to withhold or withdraw treatment, neonatal transfers, neonatal morbidity and medical treatment, nutrition, respiratory support, mortality and discharge information.
-
Type of Data Collection Event
-
Perinatal
-
Supplementary Information
-
525 recruited, 322 liveborn infants.
-
Start Date
-
1999
-
End Date
-
2000
-
Data sources
-
-
Questionnaires
-
Physical measures
-
Files
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Participants
-
Age at Data Collection Event (years)
-
0
-
Corrected Age
-
|
VPT/VLBW Group |
Control Group |
| Survived |
322
|
|
| Invited |
|
|
| Assessed |
|
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
525
|
|
| Terminations of Pregnancy |
84
|
|
| Still Births |
203
|
|
| Live Births |
322
|
|
| Admitted to NICU |
303
|
|
| Survived to Discharge |
175
|
|
Perinatal Assessment
|
525
|
Belgium |
|
EPICE
|
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) .
-
Countries
-
-
Belgium
-
Denmark
-
Estonia
-
France
-
Germany
-
Italy
-
Netherlands
-
Portugal
-
United Kingdom
-
Sweden
-
Poland
-
Geographical Area
-
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
-
VPT/VLBW Group Inclusion Criteria
-
All live and still births between 22 and 31 completed weeks of gestation.
-
Control Group Inclusion Criteria
-
n/a
-
VPT/VLBW Group Exclusion Criteria
-
none
-
Control Group Exclusion Criteria
-
n/a
-
Supplementary Information
-
Follow up of the cohort at 5 years of age in the SHIPS study
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
EPICE Cohort
|
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.
-
Type of Data Collection Event
-
Perinatal
-
Supplementary Information
-
Live births: 7900, Survived to discharge: 6972
-
Start Date
-
2011
-
End Date
-
2012
-
Data sources
-
-
Questionnaires
-
Physical measures
-
Files
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Participants
-
Age at Data Collection Event (years)
-
0
-
Corrected Age
-
|
VPT/VLBW Group |
Control Group |
| Survived |
|
|
| Invited |
|
|
| Assessed |
10329
|
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
10329
|
|
| Terminations of Pregnancy |
815
|
|
| Still Births |
1614
|
|
| Live Births |
7900
|
|
| Admitted to NICU |
7637
|
|
| Survived to Discharge |
6792
|
|
Perinatal Assessment
|
10329
|
Belgium, Denmark, Estonia, France, Germany, Italy, Netherlands, Portugal, United Kingdom, Sweden, Poland |
|
EPICure
|
All extremely preterm births at or before 25 weeks of gestation in all 276 maternity units in the whole of the UK and Ireland from 1st March 1995 to 31st December 1995.
-
Countries
-
-
Geographical Area
-
All of United Kingdom and Repulic of Ireland
-
VPT/VLBW Group Inclusion Criteria
-
Birth at or before 25+6 weeks of gestation.
-
Control Group Inclusion Criteria
-
Controls were recruited at the 6 year follow-up by identifying classmates of index children in mainstream school who were born at term (37+0 or more weeks of gestation). Controls were used in subsequent assessments.
-
VPT/VLBW Group Exclusion Criteria
-
none
-
Control Group Exclusion Criteria
-
Birth before 37+0 weeks gestational age.
-
Supplementary Information
-
Control group included for 6, 11, 19 year follow up. Where possible the same control child was used at 6 and 11 year follow ups, if not a new child was selected.
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
EPICure Cohort
|
Overview
Data were collected on maternal characteristics, maternal health and obstetric history, pregnancy complications, use of antenatal steroids, labour, delivery, infant characteristics at birth, respiratory support, neonatal morbidity, selected neonatal procedures and medical treatments, neonatal outcomes such as survival, timing of death or discharge from neonatal unit, and follow on care.
-
Type of Data Collection Event
-
Perinatal
-
Supplementary Information
-
Index only assessed control group recruited later at 6 years.
4004 births, 306 long term survivors.
-
Start Date
-
1995
-
End Date
-
1995
-
Data sources
-
-
Questionnaires
-
Physical measures
-
Files
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Participants
-
Age at Data Collection Event (years)
-
0
-
Corrected Age
-
|
VPT/VLBW Group |
Control Group |
| Survived |
|
|
| Invited |
|
|
| Assessed |
4004
|
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
4004
|
|
| Terminations of Pregnancy |
|
|
| Still Births |
|
|
| Live Births |
|
|
| Admitted to NICU |
812
|
|
| Survived to Discharge |
315
|
|
Perinatal Assessment
|
4004
|
United Kingdom, Ireland |
|
EPICure 2
|
Population based cohort, following up all births between 22 and 26 weeks of gestation in maternity units in England to mothers who were usually resident in England.
-
Countries
-
-
Geographical Area
-
All of England
-
VPT/VLBW Group Inclusion Criteria
-
All births in England between 22 and 26 completed weeks of gestation.
-
Control Group Inclusion Criteria
-
Controls were recruited at the 11 year follow-up by identifying classmates of index children in mainstream school who were born at term (37+0 or more weeks of gestation).
-
VPT/VLBW Group Exclusion Criteria
-
none
-
Control Group Exclusion Criteria
-
Birth before 37 weeks of gestation.
-
Supplementary Information
-
Control group included at 11 year follow up.
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
EPICure 2 Cohort
|
Overview
Data were collected on maternal socioeconomic and demographic characteristics, maternal health and obstetric history, pregnancy course, pregnancy complications, use of antenatal steroids, tocolysis, labour, delivery, infant condition at birth, respiratory support, neonatal morbidity, congenital anomalies, selected neonatal procedures and medical treatments, neonatal nutrition, decisions to withdraw or withhold treatment, neonatal outcomes such as survival, timing of death or discharge from neonatal unit.
In addition a Unit profile study was undertaken to collect data about unit activity, staffing and policies within neonatal units in 2005. Data on policies in associated maternity units was also collected.
-
Type of Data Collection Event
-
Perinatal
-
Start Date
-
2006
-
End Date
-
2006
-
Data sources
-
-
Questionnaires
-
Physical measures
-
Files
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Participants
-
Age at Data Collection Event (years)
-
0
-
Corrected Age
-
|
VPT/VLBW Group |
Control Group |
| Survived |
|
|
| Invited |
|
|
| Assessed |
3133
|
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
3133
|
|
| Terminations of Pregnancy |
|
|
| Still Births |
1099
|
|
| Live Births |
2034
|
|
| Admitted to NICU |
1686
|
|
| Survived to Discharge |
1041
|
|
Perinatal Assessment
|
3133
|
United Kingdom |
|
EPIPAGE 1
|
Population based cohort consisting of all births (live births, still births and termination of pregnancy) in all maternity units in the 9 regions.
-
Countries
-
-
Geographical Area
-
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).
-
VPT/VLBW Group Inclusion Criteria
-
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)
+
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)
+
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.
-
Control Group Inclusion Criteria
-
Infants born alive between 39 and 40 completed weeks (one week recruitment in 1997).
-
VPT/VLBW Group Exclusion Criteria
-
none
-
Control Group Exclusion Criteria
-
none
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
EPIPAGE 1 Cohort
|
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.
-
Type of Data Collection Event
-
Perinatal
-
Start Date
-
1997
-
End Date
-
1998
-
Data sources
-
-
Questionnaires
-
Physical measures
-
Files
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Participants
-
Age at Data Collection Event (years)
-
0
-
Corrected Age
-
|
VPT/VLBW Group |
Control Group |
| Survived |
|
|
| Invited |
|
|
| Assessed |
|
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
4664
|
|
| Terminations of Pregnancy |
728
|
|
| Still Births |
786
|
|
| Live Births |
3150
|
|
| Admitted to NICU |
|
|
| Survived to Discharge |
|
|
Perinatal Assessment
|
3581
|
France |
|
EPIPAGE 2
|
Population based cohort - All births (live births, still births and terminations of pregnancy) in maternity units within the regions.
-
Countries
-
-
Geographical Area
-
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.
-
VPT/VLBW Group Inclusion Criteria
-
All infants (live born, stillborn) and all terminations of pregnancy between 22 and 31 completed weeks of gestation
+
a sample of moderate preterm births (all births and late terminations) at 32–34 weeks. Recruitment between March 28, 2011 and December 31, 2011.
-
Control Group Inclusion Criteria
-
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.
-
VPT/VLBW Group Exclusion Criteria
-
none
-
Control Group Exclusion Criteria
-
none
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
EPIPAGE 2 Cohort
|
Overview
Data about pregnancy and birth were extracted from medical records or obtained by questionnaires sent to the maternity unit including maternal SES and demographic characteristics, maternal and paternal medical history, maternal and paternal height and weight, obstetric history, details of current pregnancy, infertility treatment, prenatal screening tests, decisions to withhold or withdraw treatment during pregnancy or in delivery room, hospitalisations during pregnancy, pregnancy complications, drug treatments during pregnancy, maternal transfers, prenatal growth estimates, delivery, treatments during labour, summary of mother's stay in maternity unit, infant's condition during stay in maternity unit, delivery room management, and mortality. Data on the neonatal period were collected from neonatal records or the neonatology team including neonatal complications and morbidity, neurological evaluation, care and treatment, developmental care, nutrition, congenital anomalies, infant condition at discharge, and decisions to withhold or withdraw treatment.
Mothers whose infant was discharged alive from the first neonatal unit or who were discharged from the maternity unit and not transferred, were interviewed about maternal SES and demographic characteristics, health insurance, parental height and weight, smoking before/during pregnancy, fertility treatment, previous pregnancies, antenatal consultations and care, birth plan and reasons for any changes, hospitalisations during pregnancy, maternal transfers for delivery, length of hospital stay before birth, neonatal breastfeeding and nutrition, infant transfers.
Additionally, questionnaires were sent to the maternity and neonatal units to evaluate the type of unit, policies and practices, types of care delivered, staffing, unit environment, treatment to maintain pregnancy/improve infant viability, policies related to delivery, transfers and transport services, liaison between maternity and neonatal units, decisions to withhold or withdraw care, details of intensive care, type of examinations/screening provided to infants, developmental care and parental involvement, breastfeeding, policies and practices related to discharge and follow up after discharge.
-
Type of Data Collection Event
-
Perinatal
-
Supplementary Information
-
Eligible: 8400
Refusals to be included in the cohort: 596 (7%)
Included in the cohort (Parental consent): 7804
Termination of pregnancy: 1328
Stillbirth: 1306
Death in maternity ward : 290
Death in NICU: 413
Live born : 5170
Discharged alive from NICU: 4467
Maternal questionnaire completed: 7804
Neonatal questionnaire completed : 4880
Self-administered questionnaire to the mother : 2946
Maternal interview: 3427
-
Start Date
-
2011-03
-
End Date
-
2011-12
-
Data sources
-
-
Questionnaires
-
Physical measures
-
Biosamples
-
Administrative databases
-
Data sources - Biosamples
-
-
Data sources - Administrative databases
-
-
Files
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Participants
-
Age at Data Collection Event (years)
-
0
-
Corrected Age
-
|
VPT/VLBW Group |
Control Group |
| Survived |
4467
|
|
| Invited |
4467
|
|
| Assessed |
4467
|
0
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
6555
|
|
| Terminations of Pregnancy |
1313
|
|
| Still Births |
1278
|
|
| Live Births |
3964
|
|
| Admitted to NICU |
|
|
| Survived to Discharge |
|
|
Perinatal Assessment
|
5170
|
France |
|
EST 2002-2003
|
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.
-
Countries
-
-
Geographical Area
-
All of Estonia
-
VPT/VLBW Group Inclusion Criteria
-
all live births at <1000g, <29 completed weeks of gestation.
-
Control Group Inclusion Criteria
-
n/a
-
VPT/VLBW Group Exclusion Criteria
-
Stillborn
-
Control Group Exclusion Criteria
-
n/a
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
EST 2002-2003 Cohort
|
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).
-
Start Date
-
2007
-
End Date
-
2008
-
Data sources
-
-
Questionnaires
-
Cognitive measures
-
Physical measures
-
Files
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Participants
-
Age at Data Collection Event (years)
-
5
|
VPT/VLBW Group |
Control Group |
| Survived |
34
|
|
| Invited |
34
|
|
| Assessed |
33
|
|
5 Year Follow Up
|
80
|
Estonia |
|
EST 2007-2008
|
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.
-
Countries
-
-
Geographical Area
-
All of Estonia
-
VPT/VLBW Group Inclusion Criteria
-
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.
-
Control Group Inclusion Criteria
-
Term healthy infant matched with the study group by sex, age and birth hospital.
-
VPT/VLBW Group Exclusion Criteria
-
Stillborn
-
Control Group Exclusion Criteria
-
Illness and intensive care requirement within 1st week of life.
-
Supplementary Information
-
Inclusion criteria are different for 2 year and 5 year follow up, including the range of birth years.
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
EST 2007-2008 Cohort
|
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.
-
Supplementary Information
-
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.
-
Start Date
-
2012
-
End Date
-
2014
-
Data sources
-
-
Questionnaires
-
Cognitive measures
-
Physical measures
-
Biosamples
-
Data sources - Biosamples
-
-
Files
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Participants
-
Age at Data Collection Event (years)
-
5
|
VPT/VLBW Group |
Control Group |
| Survived |
55
|
|
| Invited |
55
|
|
| Assessed |
53
|
41
|
5 Year Follow Up
|
360
|
Estonia |
|
GNN
|
Data collected at a Follow-up examination at preschool age (5-7 years)
-
Countries
-
-
Geographical Area
-
Area all over Germany
-
VPT/VLBW Group Inclusion Criteria
-
Birth weight < 1500g and gestational age < 37 weeks.
-
Control Group Inclusion Criteria
-
Survey of Neonates in Pomerania (SNiP II). Living in certain geographical region (determined by postcode).
-
VPT/VLBW Group Exclusion Criteria
-
Missing parental consent
-
Control Group Exclusion Criteria
-
Missing parental consent, children placed for adoption, insufficient knowledge of German language for interviews.
-
Supplementary Information
-
The Data was collected at a Follow-up examination at preschool age (5-6 years) including: - physician interview - parental interview - examination of the child by physician (vital signs, body measurements, motor development test, development test, spirometry, eye-test, hearing-test) - vaccination records with the International Certificate of Vaccination or Prophylaxis (ICVP) - body measurements through the years measured at the U examinations until the U9
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
GNN-5 year follow up
|
Overview
-
Type of Data Collection Event
-
Follow-up
-
Start Date
-
2014-09
-
End Date
-
2021-08
-
Data sources
-
-
Files
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Participants
-
Age at Data Collection Event (years)
-
5
-
Corrected Age
-
|
VPT/VLBW Group |
Control Group |
| Survived |
14337
|
|
| Invited |
15299
|
|
| Assessed |
3606
|
|
5 year follow-up - Parental questionnaire
|
3606
|
Germany |
|
NTNU LBW Life
|
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.
-
Countries
-
-
Geographical Area
-
Mid-Norway (Counties of South and North Trøndelag, Møre and Romsdal, City of Trondheim)
-
VPT/VLBW Group Inclusion Criteria
-
VLBW: All infants admitted to the NICU at St. Olavs Hospital, Trondheim University Hospital ≤ 1500 g.
-
Control Group Inclusion Criteria
-
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.
-
VPT/VLBW Group Exclusion Criteria
-
Congenital anomalies and syndromes.
-
Control Group Exclusion Criteria
-
Congenital anomalies and syndromes.
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
NTNU LBW Life Cohort
|
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.
-
Type of Data Collection Event
-
Perinatal
-
Supplementary Information
-
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.
-
Start Date
-
1986
-
End Date
-
1988
-
Data sources
-
-
Data sources - Administrative databases
-
-
Files
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Participants
-
Age at Data Collection Event (years)
-
0
-
Corrected Age
-
|
VPT/VLBW Group |
Control Group |
| Survived |
88
|
|
| Invited |
121
|
|
| Assessed |
121
|
120
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
121
|
120
|
| Terminations of Pregnancy |
|
|
| Still Births |
|
|
| Live Births |
121
|
120
|
| Admitted to NICU |
121
|
4
|
| Survived to Discharge |
88
|
120
|
Perinatal Assessment
|
121
|
Norway |
|
PRIMAL
|
Inclusion of moderate preterm infants born at 28+0 to 32+6 weeks of gestational age
-
Countries
-
-
Geographical Area
-
18 level 1 NICUs all over Germany
-
VPT/VLBW Group Inclusion Criteria
-
written informed consent of parents/caregivers and admission within 48 hours of life
-
Control Group Inclusion Criteria
-
Inclusion criteria were identical for the control and verum groups
-
VPT/VLBW Group Exclusion Criteria
-
Major malformations incompatible with survival beyond 48 hours or severely affecting the gastrointestinal tract (precluding adequate enteral feeding, requiring neonatal surgery, or associated with NEC Bell stage ≥1B)
-
Control Group Exclusion Criteria
-
Exclusion criteria were identical for the control and verum groups
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
PRIMAL
|
Overview
Primary study with data collection from prenatal maternal data and data concerning the preterm infant from birth to discharge, with FU planned at 6 months, 1 year and 2 years of corrected age.
-
Type of Data Collection Event
-
Perinatal
-
Start Date
-
2018-04
-
End Date
-
2020-06
-
Data sources
-
-
Physical measures
-
Biosamples
-
Others :
Case report forms
-
Files
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Participants
-
Age at Data Collection Event (years)
-
0
-
Corrected Age
-
|
VPT/VLBW Group |
Control Group |
| Survived |
306
|
312
|
| Invited |
306
|
312
|
| Assessed |
306
|
312
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
306
|
312
|
| Terminations of Pregnancy |
0
|
0
|
| Still Births |
0
|
0
|
| Live Births |
306
|
312
|
| Admitted to NICU |
306
|
312
|
| Survived to Discharge |
306
|
312
|
Perinatal
|
475
|
Germany |
|
SwissNeoNet
|
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.
-
Countries
-
-
Geographical Area
-
National
-
VPT/VLBW Group Inclusion Criteria
-
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
-
VPT/VLBW Group Exclusion Criteria
-
Stillborn infants, infants born <22w GA
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Swiss Neonatal Network 2000-2024
|
Overview
The Minimal Neonatal Dataset (MNDS) contains all information on antenatal, maternal, and perinatal characteristics, interventions, and outcomes for each infant up to his or her final discharge from primary hospitalization. The MNDS contains data for eligible VPT and EPT infants.
-
Type of Data Collection Event
-
Perinatal
-
Start Date
-
2000-01
-
End Date
-
2024-12
-
Files
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Participants
-
Corrected Age
-
|
VPT/VLBW Group |
Control Group |
| Survived |
|
|
| Invited |
|
|
| Assessed |
|
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
21515
|
|
| Terminations of Pregnancy |
|
|
| Still Births |
|
|
| Live Births |
|
|
| Admitted to NICU |
|
|
| Survived to Discharge |
|
|
MNDS SwissNeoNet 2000-2024
|
21515
|
Switzerland |