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Database primary key

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.

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 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

0 if original dataset, KpPatientId of original if duplicated

if the patient receives glucose iv in addition with proteins or proteins and lipids.

Clinical or subclinical identified on aEEG/EEG requiring medical treatment

from admission until surgery

High Flow nasal Oxygen, CPAP,NIV (non-invasiveventilation) (from admission until surgery)

cardiopulmonary resuscitation requiring chest compressions after discharge stage 1 until surgery stage 2

###RACHS - Risk adjustment for congenital heart surgery

Individual procedures by risk category

Risk category 1

• Atrial septal defect surgery (including atrial septal defect secundum, sinus venosus atrial septal defect, patent foramen ovale closure)
• Aortopexy
• Patent ductus arteriosus surgery at age >30 d
• Coarctation repair at age >30 d
• Partially anomalous pulmonary venous connection surgery

Risk category 2

• Aortic valvotomy or valvuloplasty at age >30 d
• Subaortic stenosis resection
• Pulmonary valvotomy or valvuloplasty
• Pulmonary valve replacement
• Right ventricular infundibulectomy
• Pulmonary outflow tract augmentation
• Repair of coronary artery fistula
• Atrial septal defect and ventricular septal defect repair
• Atrial septal defect primum repair
• Ventricular septal defect repair
• Ventricular septal defect closure and pulmonary valvotomy or infundibular resection
• Ventricular septal defect closure and pulmonary artery band removal
• Repair of unspecified septal defect
• Total repair of tetralogy of Fallot
• Repair of total anomalous pulmonary veins at age >30 d
• Glenn shunt
• Vascular ring surgery
• Repair of aorta-pulmonary window
• Coarctation repair at age ≤30 d
• Repair of pulmonary artery stenosis
• Transection of pulmonary artery
• Common atrium closure
• Left ventricular to right atrial shunt repair

Risk category 3

• Aortic valve replacement
• Ross procedure
• Left ventricular outflow tract patch
• Ventriculomyotomy
• Aortoplasty
• Mitral valvotomy or valvuloplasty
• Mitral valve replacement
• Valvectomy of tricuspid valve
• Tricuspid valvotomy or valvuloplasty
• Tricuspid valve replacement
• Tricuspid valve repositioning for Ebstein anomaly at age >30 d
• Repair of anomalous coronary artery without intrapulmonary tunnel
• Repair of anomalous coronary artery with intrapulmonary tunnel (Takeuchi)
• Closure of semilunar valve, aortic or pulmonary
• Right ventricular to pulmonary artery conduit
• Left ventricular to pulmonary artery conduit
• Repair of double-outlet right ventricle with or without repair of right ventricular obstruction
• Fontan procedure
• Repair of transitional or complete atrioventricular canal with or without valve replacement
• Pulmonary artery banding
• Repair of tetralogy of Fallot with pulmonary atresia
• Repair of cor triatriatum
• Systemic to pulmonary artery shunt
• Atrial switch operation
• Arterial switch operation
• Reimplantation of anomalous pulmonary artery
• Annuloplasty
• Repair of coarctation and ventricular septal defect closure
• Excision of intracardiac tumor

Risk category 4

• Aortic valvotomy or valvuloplasty at age ≤30 d
• Konno procedure
• Repair of complex anomaly (single ventricle) by ventricular septal defect enlargement
• Repair of total anomalous pulmonary veins at age ≤30 d
• Atrial septectomy
• Repair of transposition, ventricular septal defect, and subpulmonary stenosis (Rastelli)
• Atrial switch operation with ventricular septal defect closure
• Atrial switch operation with repair of subpulmonary stenosis
• Arterial switch operation with pulmonary artery band removal
• Arterial switch operation with ventricular septal defect closure
• Arterial switch operation with repair of subpulmonary stenosis
• Repair of truncus arteriosus
• Repair of hypoplastic or interrupted arch without ventricular septal defect closure
• Repair of hypoplastic or interrupted aortic arch with ventricular septal defect closure
• Transverse arch graft
• Unifocalization for tetralogy of Fallot and pulmonary atresia
• Double switch

Risk category 5

• Tricuspid valve repositioning for neonatal Ebstein anomaly at age ≤30 d
• Repair of truncus arteriosus and interrupted arch

Risk category 6

• Stage 1 repair of hypoplastic left heart syndrome (Norwood operation)
• Stage 1 repair of nonhypoplastic left heart syndrome conditions
• Damus-Kaye-Stansel procedure

main surgery stage 2

after main surgery stage 2

main intervention stage 2

main surgery stage 2

main surgery stage 2

main surgery stage 2

main surgery stage 2

main surgery stage 2

Any redo surgery after main surgery stage 2 until discharge stage 2

Any heart catheter intervention after main surgery stage 2 until discharge stage 2

cardiopulmonary resuscitation requiring chest compression, after main surgery stage 2 until discharge stage 2, cumulatively

cumulatively all incidents post op stage 2 including re do interventions

High Flow nasal Oxygen, CPAP, NIV (non invasive ventilation)

cumulatively all incidents post op stage 1 including re do interventions

confirmed infection = any evidence of infection requiring antibiotic therapy which is confirmed on microbiological culture (despite perioerative antibiotic prophylaxis)

wound infection = any evidence of infection requiring antibiotic therapy which is confirmed on a positive wound swap (despite perioperative prophylaxis)

respiratory = pleural effusions(drainage required), pneumothorax, haematothorax

cardiogenic NEC = Bell stage 2 or 3, infants with abdominal distension, blood in stool together with abdominal x-ray or ultrasound showing bowel oedema, pneumastosis or pneumoperitoneum

Stroke = clinical or MRI

LCO syndrome = combination of:

• mean blood pressure lower than 5th percentile of age-related normal values and/or increased inotropics/vasopressors required to achieve this blood pressure goal
• difference between the arterial oxygen saturation (SaO2) and central venous oxygen saturation (ScvO2) value of >35% or Scv=2<60% for non cyanotoc patients
• urine output <1ml/kg/hr
• peripheral temperature <32°C in the absence of the use of target temperature management
• serum lactate >2mmol/L

Any evidence of infection requiring antibiotic therapy which is confirmed on microbiological culture (despite perioperative anibiotic prophylaxis)

Any evidence of infection requiring antibiotic therapy which is confirmed on a wound swab (despite perioperative antibiotic prophylaxis)

Day of admission to your hospital until discharge after stage 2