|
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
Perinatal assessment included collection of data on maternal obstetric history and prenatal care, pregnancy complications, delivery room care, pregnancy outcomes, infant condition and characteristics at birth, neonatal morbidity,medical treatment during the stay in the NICU, conditions at 36 weeks postmenstrual age and at discharge from the NICU, hospital admissions and transfers, infant survival, and maternal sociodemographic factors.
-
Type of Data Collection Event
-
Perinatal
-
Start Date
-
2003-07
-
End Date
-
2005-06
-
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 |
2493
|
|
| Terminations of Pregnancy |
281
|
|
| Still Births |
359
|
|
| Live Births |
1853
|
|
| Admitted to NICU |
1818
|
|
| Survived to Discharge |
1466
|
|
Perinatal Assessment
|
2493
|
Italy |
|
AYLS
|
All hospitals in area of Uusimaa.
-
Countries
-
-
Geographical Area
-
Uusimaa
-
VPT/VLBW Group Inclusion Criteria
-
All infants born alive and admitted to neonatal wards in obstetric units or transferred to the Neonatal Intensive care unit between 15 March 1985 and 14 March 1986 in the study area. No specific inclusion criteria related to gestational age or birth weight.
-
Control Group Inclusion Criteria
-
An infant born after every second hospitalized infant and without evidence of neonatal illness was identified from one of the three biggest maternity hospitals in the study area during the same period.
-
VPT/VLBW Group Exclusion Criteria
-
none
-
Control Group Exclusion Criteria
-
none
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
AYLS Cohort
|
Overview
Perinatal data were collected on gestational age, maternal smoking during pregnancy, pregnancy complications, delivery and birth, infant sex, length, weight, head circumference, parental socioeconomic status, infant nutrition/breastfeeding, neonatal morbidity, respiratory support, hospital admissions and discharge from the NICU.
-
Type of Data Collection Event
-
Perinatal
-
Supplementary Information
-
Cohort followed up those admitted to NICU within first 10 days, not specifically preterm or VLBW infants. Full cohort consisted of 2193 infants (among hospitalized infants preterm n=463 and term n=1070; among controls preterms n=17 and terms n=641 (for one the gestational age could not be verified))
-
Start Date
-
1985-03
-
End Date
-
1986-03
-
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 |
1535
|
658
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
108
|
|
| Terminations of Pregnancy |
|
|
| Still Births |
|
|
| Live Births |
108
|
|
| Admitted to NICU |
|
|
| Survived to Discharge |
|
|
Perinatal Assessment
|
1535
|
Finland |
|
BEST/BLS
|
The BLS started off as a geographically whole population study of infants admitted to neonatal special care in South Bavaria (Germany). The children and their families were recruited from 16 children’s hospitals, including 153 neonatal units.
-
Countries
-
-
Geographical Area
-
Southern Bavaria
-
VPT/VLBW Group Inclusion Criteria
-
Infants born during the period February 1985 and March 1986 who required admission to a neonatal unit within the first 10 days after birth, and were born VP/VLBW (<32 weeks gestational age or <1500g birth weight): N=682.
-
Control Group Inclusion Criteria
-
Healthy infants who were cared for on the normal postnatal wards in the same obstetric hospitals: N=916.
-
VPT/VLBW Group Exclusion Criteria
-
none
-
Control Group Exclusion Criteria
-
none
-
Supplementary Information
-
Data collection of control children started at the same time as for the VP/VLBW infants, beginning at birth and throughout all follow-up assessments.
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Bavarian Longitudinal Study Cohort
|
Overview
Perinatal data were collected from medical records and clinical assessments on gestational age, maternal smoking during pregnancy, pregnancy complications, delivery and birth, infant sex, length, weight, head circumference, parental socioeconomic status, infant nutrition/breastfeeding, neonatal morbidity, respiratory support, hospital admissions and discharge from the NICU. Additionally, the parents of the infant completed the Family Adversity Index (FAI), Psychosocial Stress Index (PSI) and the Parent-Infant Relationship Index (PIRI) during an interview.
-
Type of Data Collection Event
-
Perinatal
-
Supplementary Information
-
Cohort recruited live born infants admitted to the NICU (no terminations of pregnancy or still births). VPT/VLBW group - Total Births n=682, Live Births n=682, Admitted to NICU n=682, Survived to Discharge n=503. Control group - Total Births n=916, Admitted to NICU n/a, Survived to Discharge n=916.
-
Start Date
-
1985
-
End Date
-
1986
-
Data sources
-
-
Questionnaires
-
Cognitive measures
-
Physical measures
-
Administrative databases
-
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 |
|
|
| Invited |
|
|
| Assessed |
682
|
916
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
682
|
916
|
| Terminations of Pregnancy |
|
|
| Still Births |
|
|
| Live Births |
682
|
|
| Admitted to NICU |
682
|
|
| Survived to Discharge |
503
|
916
|
Perinatal Assessment
|
682
|
Germany |
|
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
-
Supplementary Information
-
| # |
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 |
|
EPICE-PT
|
The EPICE-PT cohort included all births (terminations of pregnancy, stillbirths, live births), from 22+0 to 31+6 weeks of gestation, occurred between 1st June 2011 and 31st May 2012.
The EPICE-PT involved all of the public maternity units (n=27) from two Portuguese regions, the Northern and Lisbon and Tagus Valley, as well as three private units from Lisbon.
-
Countries
-
-
Geographical Area
-
Northern Region; Lisbon and Tagus Valley Region.
-
VPT/VLBW Group Inclusion Criteria
-
All births (terminations of pregnancy, stillbirths, live births) between 22+0 and 31+6 weeks of gestation.
Births occurred between 1st June 2011 and 31st May 2012.
-
Control Group Inclusion Criteria
-
n/a
-
VPT/VLBW Group Exclusion Criteria
-
None
-
Control Group Exclusion Criteria
-
n/a
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
Portugal
|
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 neonatal 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
-
Of the 607 infants discharged alive from the hospital, informed consent for the follow-up evaluations was obtained for 544 infants.
No control group.
-
Start Date
-
2011-06
-
End Date
-
2012-05
-
Data sources
-
-
Questionnaires
-
Physical measures
-
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 |
974
|
|
| Terminations of Pregnancy |
95
|
|
| Still Births |
155
|
|
| Live Births |
724
|
|
| Admitted to NICU |
713
|
|
| Survived to Discharge |
607
|
|
Perinatal Assessment
|
974
|
Portugal |
|
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
-
Supplementary Information
-
| # |
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
-
Supplementary Information
-
| # |
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
Information was collected retrospectively from hospital records for 68 variables related to pregnancy risk factors, delivery, infant condition at birth, mortality, short-term neonatal morbidity, selected neonatal procedures, and length of hospital stay. The Estonian Medical Birth Register was used to obtain the number of births and the number of VPT stillbirths, and to verify that all live-born VLGA infants were accounted for.
-
Type of Data Collection Event
-
Perinatal
-
Supplementary Information
-
-
Start Date
-
2002
-
End Date
-
2003
-
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 |
|
|
| Invited |
|
|
| Assessed |
80
|
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
|
|
| Terminations of Pregnancy |
|
|
| Still Births |
|
|
| Live Births |
80
|
|
| Admitted to NICU |
|
|
| Survived to Discharge |
38
|
|
Perinatal Assessment
|
80
|
Estonia |
|
ETFOL
|
All infants born in 1994-1995 extremely preterm or at very low birthweight, in Danish Hospitals with a neonatal unit (all 18 units participated).
-
Countries
-
-
Geographical Area
-
All of Denmark
-
VPT/VLBW Group Inclusion Criteria
-
Birth year 1994 – 1995, very low birth weight (< 1000g) or very low gestational age (< 28 completed weeks of gestation).
-
Control Group Inclusion Criteria
-
Babies born at term – control group.
-
VPT/VLBW Group Exclusion Criteria
-
none
-
Control Group Exclusion Criteria
-
none
-
Supplementary Information
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
ETFOL Cohort
|
Overview
Data were collected prospectively from patient records by the study team using standardised forms and submitted to the project centre at Odense University Hospital. The cohort data was cross-linked with the Danish Medical Birth Register resulting in the identification of a number of additional infants; data were collected retrospectively for these infants. Data were collected on pregnancy course, labour and delivery, whether active care was received, physical characteristics at birth, clinical indicators, respiratory support, neonatal morbidity, developmental care, neuroimaging, brain lesions, discharge, and mortality.
-
Type of Data Collection Event
-
Perinatal
-
Supplementary Information
-
Full cohort assessed.
-
Start Date
-
1994
-
End Date
-
1995
-
Data sources
-
-
Questionnaires
-
Physical measures
-
Administrative databases
-
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 |
407
|
|
| Invited |
407
|
|
| Assessed |
407
|
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
477
|
76
|
| Terminations of Pregnancy |
|
|
| Still Births |
|
|
| Live Births |
477
|
76
|
| Admitted to NICU |
407
|
|
| Survived to Discharge |
331
|
|
Perinatal Assessment
|
477
|
Denmark |
|
EXPRESS
|
Population based cohort consisting of all live born (gestational age equal to or less than 26 weeks+6 days) and stillborn infants (gestational age 22+0 weeks–26 +6 weeks) delivered extremely preterm in Sweden from April 1, 2004, to March 31, 2007.
-
Countries
-
-
Geographical Area
-
All of Sweden
-
VPT/VLBW Group Inclusion Criteria
-
The study population comprised all live-born (gestational age <27+0 weeks) and stillborn infants (gestational age 22+0 weeks – 26+6 weeks) delivered extremely preterm in Sweden from April 1, 2004, to March 31, 2007.
-
Control Group Inclusion Criteria
-
Selection criteria for controls were singleton at-term birth with a 5-minute Apgar score greater than 3 with matching of control participants for place of living, sex, day of birth, and maternal country of birth.
-
VPT/VLBW Group Exclusion Criteria
-
Women delivering extremely preterm but not residing in Sweden in study period. Terminations of pregnancy and infants born outside of Sweden and transferred to Sweden for neonatal care were also excluded.
-
Control Group Exclusion Criteria
-
none
-
Supplementary Information
-
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
EXPRESS Cohort
|
Overview
Data were collected prospectively by local hospital staff and cross-linked with the National Medical Birth Registry to ensure the accuracy of the information captured. Data on mothers and still births were collected at time of delivery and on liveborns during the first 180 days or until discharge or death.
Approximately 220 data items were collected including maternal sociodemographic information, maternal medical and obstetric history, pregnancy course, labour and delivery, infant condition at birth, details on resuscitation, illness severity at admission to neonatal intensive care unit, selected neonatal procedures, and infant outcomes such as survival, neonatal morbidity, time of death, use of hospital resources, and information on neonatal nutrition.
-
Type of Data Collection Event
-
Perinatal
-
Supplementary Information
-
1011 deliveries includes:
238 intrauterine deaths before labor
66 intrapartum deaths
707 liveborn
69 delivery room deaths
638 admitted to NICU
(497 survived to 1 year of age.)
-
Start Date
-
2004
-
End Date
-
2007
-
Data sources
-
-
Physical measures
-
Administrative databases
-
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 |
|
|
| Invited |
|
|
| Assessed |
1011
|
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
1009
|
895
|
| Terminations of Pregnancy |
|
|
| Still Births |
304
|
|
| Live Births |
705
|
|
| Admitted to NICU |
636
|
|
| Survived to Discharge |
507
|
|
Perinatal Assessment
|
1011
|
Sweden |
|
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.
-
Supplementary Information
-
| # |
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 |
|
PEP
|
Population based cohort, all extremely preterm births in Norway 1999-2000.
-
Countries
-
-
Geographical Area
-
All of Norway
-
VPT/VLBW Group Inclusion Criteria
-
Extremely preterm birth (gestational age <28 completed weeks of gestation or birthweight <1000 grams).
-
Control Group Inclusion Criteria
-
none
-
VPT/VLBW Group Exclusion Criteria
-
none
-
Control Group Exclusion Criteria
-
none
-
Supplementary Information
-
Control group included in subcohort study at 11 year follow up.
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
PEP Cohort
|
Overview
Perinatal data were collected by a local neonatologist investigator using standardised forms and were compared to the information submitted to the Medical Birth Register of Norway. Data were collected on pregnancy course, pregnancy complications, treatments to maintain pregnancy, labour and delivery, resuscitation, respiratory support, neonatal morbidity and medical treatments, details of neonatal screening and other medical tests, hemoglobin, bilirubin levels and metabolic complications, sensory outcome and treatments, nutrition and growth. For stillborn infants, forms about maternal health and pregnancy course were completed by obstetricians.
-
Type of Data Collection Event
-
Perinatal
-
Supplementary Information
-
Full cohort assessed
464 admitted to NICU
376 discharged alive from NICU.
-
Start Date
-
1999
-
End Date
-
2000
-
Data sources
-
-
Questionnaires
-
Physical measures
-
Administrative databases
-
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 |
464
|
|
| Invited |
464
|
|
| Assessed |
376
|
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
638
|
|
| Terminations of Pregnancy |
|
|
| Still Births |
174
|
|
| Live Births |
464
|
|
| Admitted to NICU |
462
|
|
| Survived to Discharge |
376
|
|
Perinatal Assessment
|
636
|
Norway |
|
PIPARI
|
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.
-
Countries
-
-
Geographical Area
-
Southwest Finland
-
VPT/VLBW Group Inclusion Criteria
-
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.
-
Control Group Inclusion Criteria
-
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.
-
VPT/VLBW Group Exclusion Criteria
-
Infants with major congenital anomalies or syndromes or chromosomal anomalies were excluded.
-
Control Group Exclusion Criteria
-
1) congenital anomalies or syndromes 2) mothers self-reported use of illicit drugs or alcohol during the pregnancy.
-
Supplementary Information
-
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.
| # |
Name |
Description |
Size |
Actions |
|
No files could be found.
PIPARI cohort
|
Overview
Perinatal data were collected prospectively as part of the PIPARI protocol. Data were collected on maternal characteristics, pregnancy, delivery, neonatal characteristics and early mortality. Items were also collected on neonatal treatment.
Brain ultrasound, brain MRI and Brainstem Auditory Evoked Potentials (BAEP) were carried out for the preterm infants during the neonatal period. All surviving infants underwent a Dubowitz neurological examination performed by an experienced physician and physiotherapist at 36 weeks of gestational age, term age, and at one and two months corrected age.
Antenatal Doppler of blood flow in the umbilical artery (UA), fetal middle cerebral artery (MCA), descending aorta (DAo), aortic isthmus, and ductus venosus were carried out on a subset of the cohort. Placental samples taken for histological analyses of chorioamnionitis and DNA samples for the analyses of IL-6 –572, IL-174 and Apolipoprotein E genotypes were obtained for preterm infants.
-
Type of Data Collection Event
-
Perinatal
-
Supplementary Information
-
-
Start Date
-
2001-01
-
End Date
-
2006-12
-
Data sources
-
-
Questionnaires
-
Physical measures
-
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 |
|
|
| Invited |
|
|
| Assessed |
221
|
188
|
Perinatal Information
|
VPT/VLBW Group |
Control Group |
| Total Births |
255
|
188
|
| Terminations of Pregnancy |
|
|
| Still Births |
|
|
| Live Births |
255
|
188
|
| Admitted to NICU |
248
|
|
| Survived to Discharge |
221
|
188
|
Perinatal Assessment
|
255
|
Finland |
|
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 |