Go to Data Home mnds-icon mndsb34-icon asp-icon fu1-icon fu2-icon fu5-icon sdq-icon fup-icon os1-icon os2-icon os3-icon patient-icon parent-icon

Data Structure Icon Raw Data Structure Export R Export Print Hide definitions SQL version


Version of 22.11.2024. Last major change:
Nr. Dataset R Item Description Type Min Max Unknown Start End Export Export
1 patient dataSource pDataSource Data source marker ordinal / choice_radio 0 2 2000 3000 no
 
Encoding of values: 0 = mnds, 1 = b, 2 = bExtra 		 
2 patient pKpPatientid pKpPatientid DB primary key integer 1 0 2000 3000 yes 5
 

Database primary key


  
3 patient pNeoDataset 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


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

Standard SwissNeoNet ID number


  
5 patient pMndsType 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 		 
6 patient pInformedConsent 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 		 
7 patient pDateOfBirth 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.


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

Month of birth (random if fully anonymized)


  
9 patient center pCenterNr 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/


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

Registry selector


Encoding of values: 1 = mnds, 2 = asp, 3 = mndsb34, 4 = orchid 		 
11 patient pCenterNrAnonym pCenterNrAnonym Encrypted center number integer 1 15 2000 3000 yes 23
 

Encrypted center number


  
12 patient pOutcomeStudy 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 		 
13 patient year pYearOfBirth Year of birth integer 2000 2030 2000 3000 yes 25
 

Year in which child was born


  
14 patient pMndsExclude 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 		 
15 patient pAspExclude 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 		 
16 patient pPatientNo 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)

  
17 patient pAhvNumber 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).


  
18 patient pDayOfAdmission 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 – date of birth + 1)
  • (Electronic import: use day of life)

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

Hospital where infant is born, not place where parents live


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

See Asp Definitions'


  
21 patient birthLocation pBirthLocation 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 		 
22 patient pStudy 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 		 
23 patient pFuxLocation pFuxLocation text / choice_select 3000 no
 
 
24 patient gaW pGaWeeks 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.


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

See gestational age in weeks (P_GA_weeks)


  
26 patient bw pBirthWeight 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)


  
27 patient sex pSex 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 		 
28 patient pDiedInDel pDiedInDel ordinal / choice_radio 3000 no
 
 
29 patient numberInfants pNumberOfInfants Number of infants in this birth integer 1 6 2000 3000 yes 75
 

includes stillborns and lifeborns


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

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


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

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


  
32 patient pIdentifierMother 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.


  
33 patient fu1loc pFu1Location Location of follow-up 1 text / text_field 2000 3000 yes 85
 

See P_FU2_Location


  
34 patient fu2loc pFu2Location 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


  
35 patient fu5loc pFu5Location Location of follow-up 5 text / text_field 2000 3000 yes 95
 

See P_FU2_Location


  
36 patient fu1p pFu1Performed 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 		 
37 patient fu2p pFu2Performed 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 		 
38 patient pSdqPerformed 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 		 
39 patient fu5p pFu5Performed 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 pFupPerformed 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 		 
41 patient pFu1Status pFu1Status Recruitment status text / text_field 2000 3000 no
 
 
42 patient pFu2Status pFu2Status Recruitment status text / text_field 2000 3000 no
 
 
43 patient pFu5Status pFu5Status Recruitment status text / text_field 2000 3000 no
 
 
44 patient sga pSga 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 		 
45 patient bwz pBwZscore 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 died pDied 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 		 
47 patient ses sesScoreTotal 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
12University191
11University of applied science / Polytechnic162
10HTL, HWV, HFG, Technical college etc.162
9Higher level job training142
8College of education / Lehrerseminar132
7Matura, Berufsmatura, Secondary Education with diploma132
6Apprenticeship123
5Diploma middle school (Swiss only)113
Job requiring minimal training9-114
3Regular school without job training95
2No education, unfinished regular school0-86
1Unknown / 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


  
48 patient duplicate pDsDuplicate Original kP integer 2000 3000 yes 615
 

0 if original dataset, KpPatientId of original if duplicated


  
49 patient pDsLockdate pDsLockdate date 3000 no
 
 
50 sdq sdqKpId sdqKpId integer 0 0 3000 no
 
 
51 sdq sdqOwner sdqOwner text / text_field 3000 no
 
 
52 sdq sdq1Considerate sdq1Considerate integer / choice_radio 0 2 9 3000 yes 5210
 
 
53 sdq sdq2Restless sdq2Restless integer / choice_radio 0 2 9 3000 yes 5215
 
 
54 sdq sdq3Sickness sdq3Sickness integer / choice_radio 0 2 9 3000 yes 5220
 
 
55 sdq sdq4Shares sdq4Shares integer / choice_radio 0 2 9 3000 yes 5225
 
 
56 sdq sdq5Tantrums sdq5Tantrums integer / choice_radio 0 2 9 3000 yes 5230
 
 
57 sdq sdq6Solitary sdq6Solitary integer / choice_radio 0 2 9 3000 yes 5235
 
 
58 sdq sdq7Obedient sdq7Obedient integer / choice_radio 0 2 9 3000 yes 5240
 
 
59 sdq sdq8Worries sdq8Worries integer / choice_radio 0 2 9 3000 yes 5245
 
 
60 sdq sdq9Helpful sdq9Helpful decimal / choice_radio 0 2 9 3000 yes 5250
 
 
61 sdq sdq10Fidgeting sdq10Fidgeting integer / choice_radio 0 2 9 3000 yes 5255
 
 
62 sdq sdq11Friend sdq11Friend integer / choice_radio 0 2 9 3000 yes 5260
 
 
63 sdq sdq12Fights sdq12Fights integer / choice_radio 0 2 9 3000 yes 5265
 
 
64 sdq sdq13Unhappy sdq13Unhappy integer / choice_radio 0 2 9 3000 yes 5270
 
 
65 sdq sdq14Liked sdq14Liked integer / choice_radio 0 2 9 3000 yes 5275
 
 
66 sdq sdq15Distracted sdq15Distracted integer / choice_radio 0 2 9 3000 yes 5280
 
 
67 sdq sdq16Nervous sdq16Nervous integer / choice_radio 0 2 9 3000 yes 5285
 
 
68 sdq sdq17Kind sdq17Kind integer / choice_radio 0 2 9 3000 yes 5290
 
 
69 sdq sdq18Lies sdq18Lies integer / choice_radio 0 2 9 3000 yes 5295
 
 
70 sdq sdq19Bullied sdq19Bullied integer / choice_radio 0 2 9 3000 yes 5300
 
 
71 sdq sdq20Volunteers sdq20Volunteers integer / choice_radio 0 2 9 3000 yes 5305
 
 
72 sdq sdq21Thinks sdq21Thinks integer / choice_radio 0 2 9 3000 yes 5310
 
 
73 sdq sdq22Steals sdq22Steals integer / choice_radio 0 2 9 3000 yes 5315
 
 
74 sdq sdq23Adults sdq23Adults integer / choice_radio 0 2 9 3000 yes 5320
 
 
75 sdq sdq24Fears sdq24Fears integer / choice_radio 0 2 9 3000 yes 5325
 
 
76 sdq sdq25Attention sdq25Attention integer / choice_radio 0 2 9 3000 yes 5330
 
 
77 sdq sdqDate sdqDate date 0 2 9 3000 yes 5335
 
 
78 sdq sdqAge sdqAge Corrected age at SDQ decimal 0 80 3000 yes 5336
 
 
79 sdq sdqCompletedBy sdqCompletedBy integer / choice_radio 0 2 3000 yes 5340
 
 
80 sdq sdqCompletedBySpecific sdqCompletedBySpecific text / text_field 3000 yes 5341
 
 
81 sdq sdqCompletedBy sdqTotalScore SDQ Total scale integer 0 10 3000 yes 5341
 

Sum of SDQ subscores except prosocial behavior score. If more than 1 subscore is coded as NULL, result is NULL.


  
82 sdq sdqCompletedBy sdqProsocialBehaviourScale SDQ Prosocial behavior scale integer 0 10 3000 yes 5341
 

Sum of SDQ items 1, 4, 9, 17, 20. If more than 2 items are coded as unknown, result is NULL.


  
83 sdq sdqCompletedBy sdqEmotionalSymptomsScale SDQ Emotional symptoms scale integer 0 10 3000 yes 5341
 

Sum of SDQ items 3, 8, 13, 16, 24. If more than 2 items are coded as unknown, result is NULL.


  
84 sdq sdqCompletedBy sdqConductProblemsScale SDQ Conduct problems scale integer 0 10 3000 yes 5341
 

Sum of SDQ items 5, 7, 12, 18, 22. If more than 2 items are coded as unknown, result is NULL.


  
85 sdq sdqCompletedBy sdqHyperactivityScale SDQ Hyperactivity scale integer 0 10 3000 yes 5341
 

Sum of SDQ items 2, 10, 15, 21 ,25. If more than 2 items are coded as unknown, result is NULL.


  
86 sdq sdqCompletedBy sdqPeerProblemsScale SDQ Peer problems scale integer 0 10 3000 yes 5341
 

Sum of SDQ items 6, 11, 14, 19, 23. If more than 2 items are coded as unknown, result is NULL.


  
87 sdq sdqDsStatus sdqDsStatus decimal 0 0 3000 no
 
 
88 sdq sdqErrors sdqErrors integer 0 0 3000 no
 
 
89 sdq sdqErrorReport sdqErrorReport text / text_field 3000 no
 
 
90 sdq sdqErrorlistIgnore sdqErrorlistIgnore decimal 0 0 3000 no
 
 
91 sdq sdqDsGenerated sdqDsGenerated date 0 0 3000 no
 
 
92 sdq sdqLastChange sdqLastChange date 0 0 3000 no
 
 
93 sdq sdqId sdqId text / text_field 3000 no
 
 
94 sdq sdqComments sdqComments text / text_area 3000 yes 5385
 
 
95 sdq sdqEmail sdqEmail text / text_field 3000 yes 5390
 
 
96 sdq sdqDsLockdate sdqDsLockdate date 0 0 3000 no
 
 
97 sdq sdqKfPatientid sdqKfPatientid integer 0 0 3000 no
 
 
Contact us
About us
Cookies Policy
© 2007 - 2024 Schweizerische Gesellschaft für Neonatologie, Universitätsspital CH-8091 Zürich