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Version of 20.06.2020. Last major change: Major revision for data collection as of 01.01.2020

Nr.

Dataset

R Item

Description

Type

Min

Max

Unknown

Start

End

Export

1 patient dataSource Data source marker ordinal / choice_radio 0 2 2000 3000 no

Encoding of values: 0 = mnds, 1 = b, 2 = bExtra

2 asp decimal / choice_radio 3000 no

3 patient pKpPatientid DB primary key integer 1 0 2000 3000 yes 5

Database primary key

4 patient pNeoDataset Describes dataset ("mnds", "asp", "fu1", etc.) text / choice_radio 2000 3000 no

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

5 patient pSnnid SNN-ID (leave empty if new dataset!) text / text_field 2000 3000 yes 10

Standard SwissNeoNet ID number

6 patient pMndsType MNDS type ordinal / choice_radio 1 4 2000 2016 no

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

Encoding of values: 1 = classic, 2 = died in del, 3 = IIB-cpap, 4 = transfer

7 patient pInformedConsent Informed consent given ordinal / choice_radio 1 4 2015 3000 yes 15

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

Encoding of values: 1 = Informed consent received, 2 = Patient informed, 3 = Anonymized data transfer, 4 = General consent received

8 patient pDateOfBirth Date of birth date 0 0 2000 3000 yes 20

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.

9 patient month Month of birth integer 1 12 2000 3000 yes 20

Month of birth (random if fully anonymized)

10 patient center Preset center nr text / text_field 2000 3000 yes 22

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

11 patient pRegister Register ordinal / choice_radio 1 4 2000 3000 yes 22

Registry selector

Encoding of values: 1 = mnds, 2 = asp, 3 = mndsb34, 4 = orchid

12 patient pCenterNrAnonym Encrypted center number integer 1 15 2000 3000 yes 23

Encrypted center number

13 patient pOutcomeStudy Study group selector boolean 0 1 2000 3000 no

Study group selector - ask Administrator for current specification.

Encoding of values: 0 = no, 1 = yes

14 patient year Year of birth integer 2000 2030 2000 3000 yes 25

Year in which child was born

15 patient pMndsExclude Exclude from overnight evaluation boolean 0 1 2000 3000 yes 32

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

Encoding of values: 0 = no, 1 = yes

16 patient pAspExclude Exclude from evaluation boolean 0 1 2011 3000 no

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

Encoding of values: 0 = no, 1 = yes

17 patient pPatientNo Patient number text / text_field 2000 3000 yes 35

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)

18 patient pAhvNumber AHV Number (Orchid registry only) regex / text_field 999.9999.9999.99 2019 3000 no

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

19 patient pDayOfAdmission Day of admission integer 1 365 999 2000 3000 yes 50

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

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

20 patient pPlaceOfBirth Place of birth text / text_field 2000 3000 yes 51

Hospital where infant is born, not place where parents live

21 patient pTimeOfBirth Time at birth (only ASP) time 0 23 2012 3000 yes 52

See Asp Definitions'

22 patient birthLocation Birth location ordinal / choice_radio 1 2 9 2001 3000 yes 55

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.

Encoding of values: 1 = inborn, 2 = outborn

23 patient pStudy RCT study coding ordinal / choice_radio 1 2 2000 3000 yes 56

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

Encoding of values: 1 = epo, 2 = albino, 3 = copca, 4 = music

24 patient pFuxLocation text / choice_select 3000 no

25 patient gaW Weeks of gestation integer 22 42 2000 3000 yes 60

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.

26 patient gaD Days after weeks integer 0 6 2000 3000 yes 65

See gestational age in weeks (P_GA_weeks)

27 patient bw Birth weight in g integer 100 8000 2000 3000 yes 70

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

28 patient sex Sex ordinal / choice_radio 1 2 9 2000 3000 yes 71

female or male or non-determinable at birth

Encoding of values: 1 = female, 2 = male, 9 = unknown or non-determinable

29 patient pDiedInDel ordinal / choice_radio 3000 no

30 patient numberInfants Number of infants in this birth integer 1 6 2000 3000 yes 75

includes stillborns and lifeborns

31 patient pRank Order of births text / text_field 2000 3000 yes 80

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

32 patient pHospitalId Preset hospital ID text / choice_select 2000 3000 yes 81

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

33 patient pIdentifierMother ID text/number for mother dataset (not in use) text / text_field 2020 3000 no

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

34 patient fu1loc Location of follow-up 1 text / text_field 2000 3000 yes 85

See P_FU2_Location

35 patient fu2loc Location of follow-up 2 text / text_field 2000 3000 yes 90

(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

36 patient fu5loc Location of follow-up 5 text / text_field 2000 3000 yes 95

See P_FU2_Location

37 patient fu1p Follow-up 1 has taken place boolean 0 1 2000 3000 yes 100

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

Encoding of values: 0 = no, 1 = yes

38 patient fu2p Follow-up 2 has taken place boolean 0 1 2000 3000 yes 105

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

Encoding of values: 0 = no, 1 = yes

39 patient fu5p Follow-up 5 has taken place boolean 0 1 2000 3000 yes 110

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

Encoding of values: 0 = no, 1 = yes

40 patient pSdqPerformed SDQ has taken place boolean 0 1 2000 3000 no

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

Encoding of values: 0 = no, 1 = yes

41 patient pFupPerformed Parental form filled in boolean 0 1 2000 3000 no

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

Encoding of values: 0 = no, 1 = yes

42 patient pFu1Status Recruitment status text / text_field 2000 3000 no

43 patient pFu2Status Recruitment status text / text_field 2000 3000 no

44 patient pFu5Status Recruitment status text / text_field 2000 3000 no

45 patient bwz Birth weight z-score (Voigt 2006) decimal -6 6 2000 3000 yes 115

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.

46 patient sga Birth weight < 10th percentile (Voigt 2006) boolean 0 1 2000 3000 yes 115

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.

Encoding of values: 0 = no, 1 = yes

47 patient died Child died at any time boolean 0 1 2000 3000 yes 116

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

Encoding of values: 0 = no, 1 = yes

48 patient ses Total of all available SES scores integer 2 12 2000 3000 yes 139

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)

Nr	BAG Education Levels	Years	SES
12	University	19	1
11	University of applied science / Polytechnic	16	2
10	HTL, HWV, HFG, Technical college etc.	16	2
9	Higher level job training	14	2
8	College of education / Lehrerseminar	13	2
7	Matura, Berufsmatura, Secondary Education with diploma	13	2
6	Apprenticeship	12	3
5	Diploma middle school (Swiss only)	11	3
	Job requiring minimal training	9-11	4
3	Regular school without job training	9	5
2	No education, unfinished regular school	0-8	6
1	Unknown / not possible to grade	-	9

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

49 patient duplicate Original kP integer 2000 3000 yes 615

0 if original dataset, KpPatientId of original if duplicated

50 patient pDsLockdate date 3000 no

51 asp aspOwner text / text_field 3000 no