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Database primary key

This is a variable to test import file integrity. It contains the name of the currently used datastructure for import

Describes which registry patient belongs to:
MNDS - minimal neonatal dataset (all infants < 32 weeks gestational age or <1501g birth weight)
B34 - dataset of all infants 32 0/7 weeks to 33 6/7 weeks gestation (excluding infants born <1501g birth weight - see MNDS)
ASP - all infants with hypoxic ischemic encephalopathy
OS1 - all infants with severe congenital heart disease, HLM OP < 6 weeks of life, HLHS with Hybrid procedure. OS2 - all infants with severe congenital heart disease, HLM OP < 6 weeks of life, HLHS with Hybrid procedure. OS3 - all infants with severe congenital heart disease, HLM OP < 6 weeks of life, HLHS with Hybrid procedure. FU1 - Follow-Up after 1 year FU2 - Follow-Up after 2 years FU5 - Follow-Up after 5 years SDQ - Strength and Difficulties Questionnaire FUP - Parental questionnaire

Standard SwissNeoNet ID number

Deprecated item to specify incomplete MNDS form types (transfer, CPAP)

• 1 = SwissNeoNet informed consent or Hospital GC with UNENCRYPTED data transfer: date of birth can be collected
• 2 = Patient informed but IC not received: if there is no informed consent available but parents have been informed that data will be collected for research and they did not object, the hospital can send data with its own patient or case number as identifier.
• 3 = Anonymized data transfer (request for IC not possible due to early death): if parents neither signed the informed consent form nor were previously informed, or if they reject data collection (veto), data must be entered completely anonymized. Please make sure that this option is not used due to lack of administrative effort because such data cannot be corrected, changed or tested for duplicate entries at a later date because there is no means of identification and data cannot be used for research if it would have been possible to obtain consent!
• 4 = Hospital General Consent with ENCRYPTED data transfer. In such a case, patient data can be sent to SwissNeoNet encrypted using patient or case number.
• 5 = Child born prior to Human Research Act, i.e. < 2015 (prospective data collection stopped)
• 6 = Informed consent status unknown at follow-up (stalled option - status must be known at data entry) See Forms for more details on informed consent

day / month / year
(Year of birth) If parents do not sign informed consent, this item will not be collected. Record Year of birth and use patient number as identifier.

Month of birth (random if fully anonymized)

Individual center id. Some centers represent a unit from 1 hospital, some combine units from different hospitals. See https://app.swissneonet.ch/center/

Registry selector

Encrypted center number

Study group selector - ask Administrator for current specification.

Year in which child was born

Specifies if patient must be excluded from research due to incomplete or false data.

Specifies if patient must be excluded from research due to incomplete or false data.

• Enter a unique patient identifier for your hospital.
• Mandatory, if parents informed but neither return informed consent nor veto data collection.
• Leave blank if complete anonymity required (will be deleted by system)

Swiss social security number. Needs to have the following structure: 123.1234.1234.12 (i.e. number of digits separated by periods).

admission of child (not mother) to hospital (not clinic / unit)

• If informed consent received: day / month / year
• Else: day of life (date of admission – date of birth + 1)
• (Electronic import: use day of life)

Hospital where infant is born, not place where parents live

See Asp Definitions'

inborn/outborn

• Answer "Inborn" if the infant was delivered at your center.
• Answer "Outborn" if the infant was delivered outside your center. Infants transferred between delivery room of one clinic to intensive care unit of a neighboring clinic do not count as outborn. When completing the Network data forms for outborn infants, use all information available from the hospital that transferred the infant to your center as well as from your own hospital.

Type of study the newborn was enrolled in (e.g. EPO repair)

Record the best estimate of gestational age at birth in weeks and days using the following hierarchy:

• Obstetrical measures based on last menstrual period, obstetrical parameters, and prenatal ultrasound as recorded in the maternal chart.
• Neonatologist’s estimate based on physical criteria, neurologic examination, combined physical and gestational age exam (Ballard or Dubowitz), or examination of the lens.

The best estimate should be recorded in weeks and days. In instances when the best estimate of gestational age is an exact number of weeks, enter the number of weeks in the space provided for weeks and enter “0” in the space provided for days. Do not leave the number of days blank.

See gestational age in weeks (P_GA_weeks)

first weight measured after birth (weight of tubes, metallic clamps etc. have to be subtracted)

female or male or non-determinable at birth

includes stillborns and lifeborns

A=delivered first, B=delivered second, ....

Individual hospital ID, see https://app.swissneonet.ch/hospital/

Currently not in use. Individual identifier of mother in Minimal Obstetrcial Dataset (MODS) for future research collaboration.

See P_FU2_Location

(Not required when child died)
If child will receive a follow up examination by specialized a developmental pediatrician, please specify the center (e.g., "1 Lausanne CHUV")

1 Lausanne CHUV
2 Geneva HUG
3 Berne Insel
4 Basel UKBB
5 Aarau Kinderklinik
6 Lucerne KISPI
7 Chur Kinderklinik
8 Zuich KISPI
9 St. Gallen KISPI
10 Ticino
11 Muensterlingen
12 Winterthur
13 Fribourg
14 Bienne
15 Neuchatel
16 Solothurn
17 Baden

else specify follow-up using one of the codes below:

90 other
91 private pediatrician
92 child has moved
93 parents refuse
94 non-Swiss resident
95 child died
96 fu omitted
97 fu stopped
98 record outdated
99 unknown loss to FU

See P_FU2_Location

Has a standardized follow-up examination by expert been performed at 7 - 14 months corrected for prematurity

Has a standardized follow-up examination by expert been performed at 15 - 29 months corrected for prematurity

Has a standardized follow-up examination by expert been performed at 4.5 - 6.5 years (not corrected for prematurity)?

Has a strenghts and difficulties questionnaire been filled in for this patient.

Has a parental questionnaire been filled in for this patient (usually as a replacement for a missing FU5)

Birth weight z-score based on reference data provided by Voigt M, Fusch C, Olbertz D, Hartmann K, Rochow N, Renken C, et al. Analyse des Neugeborenenkollektivs der Bundesrepublik Deutschland – 12.Mitteilung: Vorstellung engmaschiger Perzentilwerte (-kurven) für die Körpermasse Neugeborener. Geburtsh Frauenheilk. 2006; 66: 956–970.

Small for gestational age: Birth weight below the 10th percentile for gestational age based on reference data provided by Voigt M, Fusch C, Olbertz D, Hartmann K, Rochow N, Renken C, et al. Analyse des Neugeborenenkollektivs der Bundesrepublik Deutschland – 12.Mitteilung: Vorstellung engmaschiger Perzentilwerte (-kurven) für die Körpermasse Neugeborener. Geburtsh Frauenheilk. 2006; 66: 956–970.

SES is calculated according to Largo et al. (1990, Dev. Med. Child Neur., 32:30-45) by means of a six-point score of both maternal education and paternal occupation. The lowest possible SES score for either the mother or the father is 1, the highest 6. The overall SES score is a simple addition of the 2 individual scores resulting in a value between 2 and 12.

In 2018, coding was standardized to synchronize areas of profession with years of education. Please consult the SES Scoring Table.

Child died at any time after birth (including follow-up).

SES is calculated according to Largo et al. (1990, Dev. Med. Child Neur., 32:30-45) by means of a six-point score of both maternal education and paternal occupation. The lowest possible SES score for either the mother or the father is 1, the highest 6. The overall SES score is a simple addition of the 2 individual scores resulting in a value between 2 and 12.

In 2018, coding was standardized to synchronize areas of profession with years of education. Please consult the SES Scoring Table.

Please consult the SES Scoring Table.

Please consult the SES Scoring Table.

SES is calculated according to Largo et al. (1990, Dev. Med. Child Neur., 32:30-45) by means of a six-point score of both maternal education and paternal occupation. The lowest possible SES score for either the mother or the father is 1, the highest 6. The overall SES score is a simple addition of the 2 individual scores resulting in a value between 2 and 12.

In 2018, coding was standardized to synchronize areas of profession with years of education. Please use the following SES Scoring Table.

Mother's highest education (1 - 6) + Father's current occupation (1 - 6) = SES total score (2 - 12).

Classification according to education or duration of education (mother: acquired, father: current situation)

Note: For professionals who manage more than 10 workers in their own firm, as head of division, site manager or production manager, use the classification 'manager' which corresponds to category 2.

Extended help in German or French

Answer "1" if a clinical or “2” if a histological diagnosis of chorioamnionitis was recorded in the maternal or infant medical record. Answer “3” if both diagnoses were recorded.

• Answer "1" if maternal hypertension, chronic or pregnancy-induced, without edema and/or and proteinuria, was recorded in the maternal or infant medical record, or if a maternal blood pressure above 140 systolic or 90 diastolic was recorded prior to or during the present pregnancy
• Answer "2" if above condition was in combination with edema and/or proteinuria or HELLP was diagnosed

• complete = appropriate dose was given: at least 2 doses, with 24h in between, last dose >24 h before birth, or an equivalent method.
• incomplete = only one dose was given or last dose was less than 24h before birth.

Answer "Yes" if mode of delivery was caesarean section (induced or elective)

Specify if mother was tested for Sars-CoV-2 at any time during pregnancy or hospitalization period of the child and whether test was positive.

If mother was tested for Sars-CoV-2, specify type of assay used. If both tests applied, select positive over negative and PCR over serum in this order.

Specify if child was tested for Sars-CoV-2 at any time during hospitalization period and whether test was positive.

If child was tested for Sars-CoV-2, specify type of assay used. If both tests applied, select positive over negative and PCR over serum in this order

Body length at birth in cm and mm (e.g. 36.5 cm)

Longest occipito-frontal circumf. in cm and mm (e.g. 26.5 cm)

Infant’s core body temperature that was measured and recorded within the first hour after admission to your NICU (°C). Core body temperature may be measured by taking a rectal, esophageal, tympanic or axillary temperature.

• minor malformations include: malformations that do not need specific treatment during neonatal period.
• major malformations include: malformations that are lethal or need specific diagnostic or therapeutic interventions during the neonatal period.

See VON Congenital Anomalies list

see congenital malformation

Please indicate if child died in delivery room and continue with item 94 (Date of Death)

Hypoglycemia requiring intravenous glucose Def. Blood sugar < 2.6 mmol/l between 3 - 24h of life

If hypoglycemic, was blood sugar < 2 mmol/l between 3 - 24h of life?

Infant had extrapleural air diagnosed by chest radiograph or needle aspiration (thoracentesis).
For infants who had thoracic surgery and a chest tube was placed at the time of surgery OR if free air was only present on a Chest Radiograph taken immediately after thoracic surgery and was not treated with a chest tube, check NO.
For infants who had thoracic surgery and then later developed extrapleural air diagnosed by Chest Radiograph or needle thoracentesis, check YES.

• culture negative: at least one period of antibiotica during 5 or more consecutive calendar days (regardless of start and end time)
• proven: Clear clinical, radiological, or histological evidence of infection as well as at least one microbiologically relevant positive blood / liquor culture OR at least one microbiologically relevant positive confirmation of pathogen by PCR (new 2020) (if by PCR, add statement "(by PCR") to pathogen)
• date/day of onset: if informed consent received: date of onset of infection else: day of onset (date of onset – date of birth + 1) (Electronic import: use day of life)
• episodes: list dates and cultures for each episode (up to 3)

See sepsis

See sepsis

• Select given if one or several doses, any product
• Specify how many hours and minutes after birth first dose was given
• Specify how many courses were administered (if a course was split up into doses to administer surfactant, count the courses not the doses)

• Count days on which child received O2 for at least 12 hours per day, FiO2 > 21% (21% oxygen is considered room air and does not count as day of O2), prior to reaching 36 0/7 weeks gestational age or discharge home (whichever comes first).
• Saturation levels: lower level 85% up to week 34, 88% thereafter – target level 90%-95%.
• Enter 0 if O2 never required after leaving the delivery room.
• Select Home O2 (item 102) if child discharged on O2.

Any form of mechanical ventilation including high frequency oscillation. Fractions of days (minimum 12 hours) shall be rounded up to one full day. The first day of ventilation does not require 12 hours to be counted as full day.

Continuous airway pressure applied by one nasal tube or double nasal prongs or face mask. Fractions of days (minimum 12 hours) shall be rounded up to one full day.

High Flow Nasal Cannula after Initial Resuscitation – answer number of days at which the infant received air or oxygen (any FiO2) at a flow rate of 2 liters per minute or more via nasal cannula at any time after leaving the delivery room / initial resuscitation area for at least 12 hours per day. Note: Previous definition included all infants with high flow as of 1 l / min in order to match Vermont Oxford definition. This had to be changed to 2 l / min because 1 l / min was not considered clinically relevant in Switzerland and thus led to considerable errors in data collection which were revealed in MNDS audit.

Please render severest finding ever detected on either side. As our definitions follow Papile et al.* , possibly available worse results from other, more sensitive imaging procedures such as CT, MRI or PET should NOT be included.
Indicate if no cerebral ultrasonography was done.

*Ment, L. R. et al. (2002). Practice parameter : Neuroimaging of the neonate. Neurology 58:1726-1738

• subependymal: localised subependymal or choroidal (Classification of Papile Grade 1)
• intraventricular without distention: (Classification of Papile Grade 2)
• intraventricular with distention: optional as ventricular dilatation is given in a separate field below (Classification of Papile Grade 3)
• intraparenchymatous: includes unilateral and bilateral intraparenchymatous bleedings (Classification of Papile Grade 4)

• echogenic (duration >7 days): Periventricular hyperechogenicity lasting for more than 7 days.
• cystic: One or several cysts in the white matter of the brain

Select if items leucomalacia, ventricular dilatation and haemmorrhage do not apply and specify abnormality in extra field. Also add prenatally occurred cerebral abnormalities here, however do not add birth defects here – see birth defects above.

Antibiotica within first 24h of life?

• Day of life (date of death – date of birth + 1)

• Day of discharge = date of discharge – date of birth + 1

Discharge from hospital, not clinic / unit

Indicates the type of discharge: home, hospital (please specify) or death.

Indicates the type of discharge: home, hospital (please specify) or death.

• Day of discharge home = date of final discharge – date of birth + 1

(not required for electronic data submission)
Discharge from hospital, not clinic / unit

................ in grams

................. in cm and mm (e.g. 46.5 cm)

................. in cm and mm (e.g. 34.5 cm)

Indicates whether child receives

1. human milk only, 2) formula only, 3) human milk in comb. w. fortifier or formula or 4) no enteral feeding (only parenteral)

Predominant (>50%) nutrition at discharge home

Complete this item based on enteral feedings received during the 24-hour period prior to discharge home. E.g. if a child received own mother milk feeding shortly before discharge but had formula within the last 24 h, the correct answer would be formula.

Reason for discharge: 1 = lack of recourses 2 = infant requires ventilation 3 = surgery 4 = discharge planning 5 = other

any important observation made that did not fit into any of the above fields.

0 if original dataset, KpPatientId of original if duplicated

Unit of St. Gallen only: specifies contact responsible for MNDS error correction

Antibiotica within first 24h of life?

Last reason determining hospital stay 1 = Drinking Weakness 2 = Temperature instability 3 = Desaturation / Apnoe- / bradicardia-syndrome 4 = Hyperbilirubinemia 5 = Body weight 6 = Social indication 7 = Other 9 = unknown

Definition will soon be made available

Day of life until when child was treated for diagnoses determined as 'last reason for hospital stay'

Discharge home with stomach tube