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Version of 14.12.2023. Last major change: Created
Nr. Dataset Item Description Type Min Max Unknown Start End Export Export
1 patient P_Data_source pDataSource Data source marker ordinal / choice_radio 0 2 2000 3000 no
 
Encoding of values: 0 = mnds, 1 = b, 2 = bExtra 		 
2 patient __P_kp_PatientID pKpPatientid DB primary key integer 1 0 2000 3000 yes 5
 

Database primary key


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

Standard SwissNeoNet ID number


  
5 patient P_MNDS_type 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 P_Informed_consent 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 P_Date_of_birth 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 P_Month_of_birth pMonthOfBirth Month of birth integer 1 12 2000 3000 yes 20
 

Month of birth (random if fully anonymized)


  
9 patient P_Center_Nr 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 P_Register 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 P_Outcome_study 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 		 
12 patient P_Center_Nr_anonym pCenterNrAnonym Encrypted center number integer 1 15 2000 3000 yes 23
 

Encrypted center number


  
13 patient P_Year_of_birth pYearOfBirth Year of birth integer 2000 2030 2000 3000 yes 25
 

Year in which child was born


  
14 patient P_MNDS_exclude 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 P_Asp_Exclude 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 P_Patient_no 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 P_Ahv_Number 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 P_Day_of_admission 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 P_Place_of_birth pPlaceOfBirth Place of birth text / text_field 2000 3000 yes 51
 

Hospital where infant is born, not place where parents live


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

See Asp Definitions'


  
21 patient P_Birth_location 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 P_FUx_Location pFuxLocation text / choice_select 3000 no
 
 
23 patient P_Study 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 P_GA_weeks 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 P_GA_days pGaDays Days after weeks integer 0 6 2000 3000 yes 65
 

See gestational age in weeks (P_GA_weeks)


  
26 patient P_Birth_weight 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 P_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 P_Died_in_del pDiedInDel ordinal / choice_radio 3000 no
 
 
29 patient P_Number_of_infants pNumberOfInfants Number of infants in this birth integer 1 6 2000 3000 yes 75
 

includes stillborns and lifeborns


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

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


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

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


  
32 patient P_Identifier_mother 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 P_FU1_location pFu1Location Location of follow-up 1 text / text_field 2000 3000 yes 85
 

See P_FU2_Location


  
34 patient P_FU2_location 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 P_FU5_location pFu5Location Location of follow-up 5 text / text_field 2000 3000 yes 95
 

See P_FU2_Location


  
36 patient P_FU1_performed 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 P_FU2_performed 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 P_FU5_performed 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 		 
39 patient P_SDQ_performed 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 		 
40 patient P_FUp_performed 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 F_FU1_status pFu1Status Recruitment status text / text_field 2000 3000 no
 
 
42 patient F_FU5_status pFu5Status Recruitment status text / text_field 2000 3000 no
 
 
43 patient F_FU2_status pFu2Status Recruitment status text / text_field 2000 3000 no
 
 
44 patient P_Bw_Zscore 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.


  
45 patient P_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 		 
46 patientSurvey P_Survey_Patient_ID pSurveyPatientId Patient Survey ID text / text_field 2000 3000 yes 116
 

Random 8 character string to be sent to parents for participation in Patient Survey


  
47 patient P_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 		 
48 patientSurvey P_Survey_Patient_PW pSurveyPatientPw Patient Survey PW text / text_field 2000 3000 yes 117
 

Random 8 character string to be sent to parents for participation in Patient Survey


  
49 patient SES_Score_total 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


  
50 patient P_DS_duplicate pDsDuplicate Original kP integer 2000 3000 yes 615
 

0 if original dataset, KpPatientId of original if duplicated


  
51 patient P_DS_lockdate pDsLockdate date 3000 no
 
 
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