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

Standard SwissNeoNet ID number

• 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.

Year in which child was born

• 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)

female or male or non-determinable at birth

Hospital where infant is born, not place where parents live

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)

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.

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)

includes stillborns and lifeborns

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

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

(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

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.

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.

Primary language spoken at home

Nationality of mother of child

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.

• select for neuroprotection if given in appropriate dosage for neuroprotection (ca. 4g bolus, then ca. 1g/h for max. 24h)
• tick for other reason if MgSO4 given for another reason in higher dosage (e.g. Tocolysis and/or Pre-/eclampsia / Seizures)
• select none in all other cases."

Note the umbilical artery pH when available.

Enter the APGAR score at one minute as noted in the Labor and Delivery record.

Enter the APGAR score at five minutes as noted in the Labor and Delivery record.

Enter the APGAR score at ten minutes as noted in the Labor and Delivery record.

Select yes at the appropriate item if child received either of the following treatments in the delivery room

• Oxygen
• Ventilation with bag/mask (any form of positive pressure breaths administered using a resuscitation bag or other device that generates intermittent positive pressure). Answer "No" if a face mask was only used to administer CPAP and no positive pressure breaths were given.
• CPAP
• Endotracheal intubation
• Adrenaline / Epinephrine via intravenous, intracardiac or intratracheal routes
• Cardiac compression (external cardiac massage)

see delivery room oxygen

Was NIPPV or Bi-Level at any time point used for respiratory support in the delivery room.

see delivery room oxygen

see delivery room oxygen

see delivery room oxygen

see delivery room oxygen

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

Answer "Yes" if umbilical cord clamping was delayed for at least 60? (exact definition pending) seconds after birth.

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

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

More than 2 of the following symptoms are recorded twice 15-30 Min. apart: respiratory rate > 60/min, cyanosis in room air, inspiratory retractions, expiratory grunting, nasal flaring).

• None: RDS has been lasting <3 h or if the infant has been intubated immediately after birth for prolonged apnea without respiratory effort.
• Meconium aspiration syndrome: clinical criteria (meconium stained amniotic fluid) AND x-ray criteria: coarse, linear peribronchial infiltrations radiating from the hilar areas to both lungs; low diaphragm (increased lung volume due to air-trapping)
• Infectious pneumopathy: clinical, radiological or histological evidence of infection as well as at least one microbiologically relevant positive culture of tracheal aspirate or blood
• Other or unknown cause: includes transient RDS lasting ≥ 2 hours (but not transient isolated tachypnea without other signs of is not RDS), wet lung syndrome, spontaneous pneumothorax, and hyaline membrane disease

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.

Symptomatic PDA, requiring indomethacin, ibuprofen (or other drug, e.g. paracetamol) or surgery (if possible confirmed by echocardiography). Do not cross if treated only with fluid restriction and diuretics or if treated prophylactically in the absence of symptoms.

Answer "Yes" if the infant received inhaled nitric oxide (INO).

Answer "Yes" if the infant received probiotics containing live bacteria (administered enterally). This may include formulas containing probiotics or probiotic supplements added to formula or breast milk feeds. Prebiotics (non-digestible carbohydrates) and Yogurt are not considered a probiotic supplement

Enter brand name of probiotic product used as basis for probiotic treatment. If patient received two different products, e.g. due to hospital transfer, enter FIRST probiotic product given.

See product of probiotics given

• suspected: not full picture, but change in management
• proven: clinical signs (abdominal distension, bilious aspirates and/or bloody stools) and confirmed by X-ray intramural gas or at laparotomy = Bell Stage 2 or higher

• medical treatment only: medication to treat NEC (not probiotics)
• surgery: laparotomy and drainage (specify under surgery), either directly or together with medical treatment

Only fill in if NEC proven

Day of life when NEC reached MNDS status of 'proven', i.e. Bell's stage 2 with by X-ray intramural gas or at laparotomy (see NEC).

Check "Yes" if the infant has a Focal Gastrointestinal Perforation separate from Necrotizing Enterocolitis. This diagnosis will be based on visual inspection of the bowel at the time of surgery or post-mortem examination that demonstrates a single focal perforation with the remainder of the bowel appearing normal.

Antibiotica within first 24h of life?

Sum of all days of antibiotic treatment, therapeutic or prophylactic. A treatment day may be less than 12 hours to count as full day.

• 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

See sepsis

See sepsis

See sepsis

See sepsis

0: no retinopathy

1: demarcation line (Thin white line, lying within the plane of the retina and separating avascular from vascular retinal regions)

2: ridge (The line of stage 1 has increased in volume to extend out of the plane of the retina. Isolated vascular tufts may be seen posterior to the ridge at this stage)

3: extraretinal fibrovascular proliferation (This may be:

• i) continuous with the posterior edge of the ridge of stage 2
• ii) posterior, but disconnected from the ridge
• iii) into the vitreous)

4: total retinal detachment (extrafoveal or involving the fovea)

Opthalmic examination is recommended for all infants with birth weight <1500 g or with <32 weeks gestational age at 6-7 weeks postnatal age. For examination technique see guidelines for screening and treatment of ROP of the Royal College of Opthalmologists and the British Association of Perinatal Medicine 1995.

Aggressive posterior retinopathy of prematurity (AP-ROP) is a severe and rare form of ROP which is characterized by fast progression to an advanced stage with flat neovascularization in zone 1 or zone 2. Previously, AP-ROP was referred to as type II ROP or rush-type ROP. In the 2005 revised report of the International Committee for the Classification of Retinopathy of Prematurity, type II ROP or rush-type ROP were termed AP-ROP. This type of eye disease has the following characteristics: (1) more posterior location; (2) rapid progression, rather than through the classic stages 1–5; and (3) poor prognosis despite early treatment. Zhou et. al 2017

Select if examination was never performed and not required

• Answer "1" if either laser- or kryotherapy was applied
• Answer "2" if instead Bevacizumab (Avastin) or any other anti-VEGF (vascular endothelial growth factor) drug was used for treatment of ROP

• 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)

See surfactant

See surfactant

See surfactant

• 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.

Check yes if high frequency (oscillation) ventilation was applied at any time

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.

Check yes if at any time during CPAP a non-aggressive ventilation technique without endotracheal intubation was applied (Nasal Intermittent Positive Pressure Ventilation NIPPV, bi-level CPAP).

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.

Perform oxygen reduction test according to Instructions

If child requires additional oxygen at reaching 36 weeks postmenstrual age, select "yes" and specify:

• if average FiO2 is above or below 30%
• if and why child received CPAP
• if and why child was mechanically ventilated

This concept conforms to Bancalari and Jobe's recommendations. A primary condition is that the infants had received oxygen during at least 28 days before reaching 36 weeks gestational age.

see M_Oxy_36

see M_Oxy_36

see M_Oxy_36

see M_Oxy_36

see M_Oxy_36

see M_Oxy_36

see M_Oxy_36

Answer "Day of life 1-7" if systemic corticosteroids were used between day of life 1 - 7 to prevent bronchopulmonary dysplasia or chronic lung disease. Answer "After day of life 7" if systemic corticosteroids were used after day of life 7 to treat bronchopulmonary dysplasia or chronic lung disease. Inhaled corticosteroids are not considered systemic corticosteroids. Thus, if an infant received inhaled corticosteroids but did not receive systemic corticosteroids after birth to treat or prevent bronchopulmonary dysplasia or chronic lung disease, then the answer to Steroids for CLD is "No".

Answer "Yes" if systemic corticosteroids were used after birth to treat or prevent morbidities other than CLD or BPD.
Inhaled corticosteroids are not considered systemic corticosteroids. Thus, if an infant received inhaled corticosteroids but did not receive systemic corticosteroids after birth to treat morbidities other CLD or BPD the answer to Other postnatal steroids is "No".
Type and reason for the application of other steroids will be retrospectively collected if a study should be performed on this question.

Answer "Yes" if dexamethason was used at any time to treat or prevent BPD or other morbidities.

Day of life (usually it is ≥ 5) when enteral feed reached 150 ml/kg/day OR no parenteral nutrition is administered (i.e. any i.v. glucose-others than for medications infusions-, amino acids and/or lipids) whatever come first. Enter 0 if died or discharged before full feed reached.

none or minor: including ligation of preauricular tag, abscess drainage are not collected

major:

• cardiac examples: ligation of arterial ductus, atrioseptostomy (also by balloon), Fontan operation....
• other examples: herniotomy, closure of gastroschisis, omphalocele, myelomeningocele or diphragmatic hernia, correction of esophageal, duodenal or anal atresia, ventriculo-atrial shunt.....

Note:

• Fetal surgery: add timepoint of surgery as negative value to day of life based on days before birth
• ROP laser treatment is collected under ROP Treatment.

Day of life when 1st major surgery was performed (date of surgery - date of birth + 1). Fetal surgery: add timepoint of surgery as negative value to day of life, based on days before birth.

See 'Major surgery (no / yes) for definition of types of surgery recorded. If PDA surgery, give clear description of type of surgery (open thoracotomy or sternotomy / thoracoscopic surgery / interventional catheterization for PDA). If laparoscopy or laparotomy for NEC, please mention NEC, specify bowel location, and adjust NEC treatment item above!

Day of life when 2nd major surgery was performed (date of surgery - date of birth + 1). Fetal surgery: add timepoint of surgery as negative value to day of life, based on days before birth.

See 'Major surgery (no / yes) for definition of types of surgery recorded. If PDA surgery, give clear description of type of surgery (open thoracotomy or sternotomy / thoracoscopic surgery / interventional catheterization for PDA). If laparoscopy or laparotomy for NEC, please mention NEC, specify bowel location, and adjust NEC treatment item above!

Day of life when 3rd major surgery was performed (date of surgery - date of birth + 1). Fetal surgery: add timepoint of surgery as negative value to day of life, based on days before birth.

See 'Major surgery (no / yes) for definition of types of surgery recorded. If PDA surgery, give clear description of type of surgery (open thoracotomy or sternotomy / thoracoscopic surgery / interventional catheterization for PDA). If laparoscopy or laparotomy for NEC, please mention NEC, specify bowel location, and adjust NEC treatment item above!

Day of life when 4th major surgery was performed (date of surgery - date of birth + 1). Fetal surgery: add timepoint of surgery as negative value to day of life, based on days before birth.

See 'Major surgery (no / yes) for definition of types of surgery recorded. If PDA surgery, give clear description of type of surgery (open thoracotomy or sternotomy / thoracoscopic surgery / interventional catheterization for PDA). If laparoscopy or laparotomy for NEC, please mention NEC, specify bowel location, and adjust NEC treatment item above!

Day of life when 5th major surgery was performed (date of surgery - date of birth + 1). Fetal surgery: add timepoint of surgery as negative value to day of life, based on days before birth.

See 'Major surgery (no / yes) for definition of types of surgery recorded. If PDA surgery, give clear description of type of surgery (open thoracotomy or sternotomy / thoracoscopic surgery / interventional catheterization for PDA). If laparoscopy or laparotomy for NEC, please mention NEC, specify bowel location, and adjust NEC treatment item above!

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)

Nomogram for 97th percentile and 4 mm above 97 percentile:
The ventricular index is the distance between the lateral wall of the body of the lateral ventricle to the falx in the coronal plane just posterior to the foramen of Monro.
Ref: Levene, Arch Dis Childh 1981; 56: 900-904

• 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.

See Other US abnormality

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

• Time [hrs] of death after birth (if death has occurred within 24 hrs)

• Primary non-intervention: no life saving measures applied
• After redirection of care: life saving measures were attempted and subsequently aborted
• Death without redirection of care: (e.g. if child dies unexpectedly during full application of intensive care measures – i.e. intubation, etc.; or if parents insist on intensive care measures until child dies.)

• 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.

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

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

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

Predominant (>50%) nutrition at discharge

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

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

Readmission to hospital, not clinic / unit

Answer only one response indicating the primary reason for transfer.

• "Growth/Discharge Planning" = an infant is readmitted for continuing care in preparation for eventual discharge home. This category will include “back transfers” to your hospital because it is closer to the parents home.
• "Medical/Diagnostic Services" = the infant is readmitted to receive medical care or diagnostic tests which are not available at the transferring hospital.
• "Surgery" = an infant is readmitted to have surgery even if surgery is not actually performed after the transfer.
• "Other" = the reason for transfer does not meet any of the above criteria.

Note: if child readmitted within 28 days of birth, please ensure that all above values are updated as if child was not discharged from your clinic previously

• 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. 34.5 cm)

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

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.

Is child monitored at home after discharge?

Does child still need oxygen after discharge?

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

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