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Version of 23.02.2022. Last major change: Added K-ABC II subscales

Nr.

Dataset

Item

Description

Type

Min

Max

Unknown

Start

End

Export

1 patient P_Data_source 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 DB primary key integer 1 0 2000 3000 yes 5

Database primary key

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

Standard SwissNeoNet ID number

5 patient P_MNDS_type 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 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 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 Month of birth integer 1 12 2000 3000 yes 20

Month of birth (random if fully anonymized)

9 patient P_Center_Nr 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 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_Center_Nr_anonym Encrypted center number integer 1 15 2000 3000 yes 23

Encrypted center number

12 patient P_Outcome_study 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 P_Year_of_birth Year of birth integer 2000 2030 2000 3000 yes 25

Year in which child was born

14 patient P_MNDS_exclude 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 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 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 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 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)

19 patient P_Place_of_birth 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 Time at birth (only ASP) time 0 23 2012 3000 yes 52

See Asp Definitions'

21 patient P_Birth_location 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_Study 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 P_FUx_Location text / choice_select 3000 no

24 patient P_GA_weeks 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 Days after weeks integer 0 6 2000 3000 yes 65

See gestational age in weeks (P_GA_weeks)

26 patient P_Birth_weight 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 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 ordinal / choice_radio 3000 no

29 patient P_Number_of_infants Number of infants in this birth integer 1 6 2000 3000 yes 75

includes stillborns and lifeborns

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

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

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

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

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

See P_FU2_Location

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

See P_FU2_Location

36 patient P_FU1_performed 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 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 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 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 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 Recruitment status text / text_field 2000 3000 no

42 patient F_FU2_status Recruitment status text / text_field 2000 3000 no

43 patient F_FU5_status Recruitment status text / text_field 2000 3000 no

44 patient P_Bw_Zscore 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 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 patient P_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

47 patient SES_Score_total 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

48 patient P_DS_duplicate Original kP integer 2000 3000 yes 615

0 if original dataset, KpPatientId of original if duplicated

49 patient P_DS_lockdate date 3000 no

50 fu5 FU5_Date date 2000 3000 no

51 fu5 FU5_Age_calc Corrected age at FU decimal 36 100 2000 3000 yes 6995

52 fu5 SES_Education_mother3 Highest education mother text / choice_select unknown 2000 3000 yes 7000

53 fu5 SES_Occupation_mother3 Current occupation mother text / text_field unknown 2000 3000 yes 7005

54 fu5 SES_Score_mother3 SES Score of mother integer 1 6 9 2000 3000 yes 7010

55 fu5 SES_Education_father3 Training basis for current occupation father text / choice_select unknown 2000 3000 yes 7015

56 fu5 SES_Occupation_father3 Current occupation father text / text_field unknown 2000 3000 yes 7020

57 fu5 SES_Score_father3 SES Score of father integer 1 6 9 2000 3000 yes 7025

58 fu5 FU5_Examiner1 Examiner: Physician boolean 0 1 3000 yes 7030

Encoding of values: 0 = no, 1 = yes

59 fu5 FU5_Examiner2 Examiner: Psychologist boolean 0 1 3000 yes 7035

Encoding of values: 0 = no, 1 = yes

60 fu5 FU5_Examiner3 Examiner: Physiotherapist boolean 0 1 3000 yes 7040

Encoding of values: 0 = no, 1 = yes

61 fu5 FU5_Examiner4 Examiner: Pediatrician in private practice boolean 0 1 3000 yes 7045

Encoding of values: 0 = no, 1 = yes

62 fu5 FU5_Examiner5 Examiner: Other boolean 0 1 3000 yes 7050

Encoding of values: 0 = no, 1 = yes

63 fu5 FU5_Examiner5_specific Examiner: Specifics of other text / text_field 3000 yes 7055

64 fu5 FU5_Examiner_name Name of examiner text / text_field 3000 yes 7060

65 fu5 FU5_Weight Birth weight decimal 8 39 99 3000 yes 7065

66 fu5 FU5_Weight_zscore Weight z-score Braegger et al. 2011 decimal / static_text -10 10 3000 yes 7070

67 fu5 FU5_Length Length decimal 60 140 999 3000 yes 7075

68 fu5 FU5_Length_zscore length z-score Braegger et al. 2011 decimal / static_text -10 10 3000 yes 7080

69 fu5 FU5_Head_circ Head circumference decimal 40 60 99 3000 yes 7085

70 fu5 FU5_Head_circ_zscore head circumference z-score Braegger et al. 2011 decimal / static_text -10 10 3000 yes 7090

71 fu5 FU5_Dev_test Developmental test performed ordinal / choice_select 0 4 3000 yes 7095

Encoding of values: 1 = K-ABC, 2 = K-ABC II, 3 = Other, 4 = WPPSI IV, 0 = not performed

72 fu5 FU5_Dev_test_date date 3000 no

73 fu5 FU5_Dev_test_age Age at developmental test decimal 36 100 3000 yes 7097

74 fu5 FU5_poorComp Poor complience boolean 0 0 3000 yes 7098

Encoding of values: 0 = no, 1 = yes

75 fu5 FU5_Dev_test_spec Specifics of developmental test performed text / text_area 3000 yes 7100

76 fu5 FU5_Dev_test_DQ Developmental quotient integer 0 200 3000 yes 7105

77 fu5 FU5_Dev_test_level integer / choice_radio 0 2 9 3000 yes 7110

78 fu5 FU5_SON_R decimal 0 0 3000 no

79 fu5 FU5_SON_R1_raw decimal 0 0 3000 no

80 fu5 FU5_SON_R2_raw decimal 0 0 3000 no

81 fu5 FU5_SON_R3_raw decimal 0 0 3000 no

82 fu5 FU5_SON_R4_raw decimal 0 0 3000 no

83 fu5 FU5_SON_R5_raw decimal 0 0 3000 no

84 fu5 FU5_SON_R6_raw decimal 0 0 3000 no

85 fu5 FU5_SON_R1_dev decimal 0 0 3000 no

86 fu5 FU5_SON_R2_dev decimal 0 0 3000 no

87 fu5 FU5_SON_R3_dev decimal 0 0 3000 no

88 fu5 FU5_SON_R4_dev decimal 0 0 3000 no

89 fu5 FU5_SON_R5_dev decimal 0 0 3000 no

90 fu5 FU5_SON_R6_dev decimal 0 0 3000 no

91 fu5 FU5_SON_R_sum decimal 0 0 3000 no

92 fu5 FU5_SON_R_mean decimal 0 0 3000 no

93 fu5 FU5_SON_R_IQ SON-R IQ decimal 0 0 3000 yes 7200

94 fu5 FU5_KABC_0 K-ABC performed boolean 0 0 3000 no

Encoding of values: 0 = no, 1 = yes

95 fu5 FU5_KABC_3_raw K-ABC item 3. Handbewegungen raw value integer 0 0 3000 no

96 fu5 FU5_KABC_3_SED K-ABC item 4 raw value integer 0 0 3000 no

97 fu5 FU5_KABC_3_NV integer 0 0 3000 no

98 fu5 FU5_KABC_4_raw K-ABC item 4. Gestaltschliessen raw value integer 0 0 3000 no

99 fu5 FU5_KABC_4_SGD integer 0 0 3000 no

100 fu5 FU5_KABC_5_raw K-ABC item 5. Zahlen nachsprechen raw value integer 0 0 3000 no

101 fu5 FU5_KABC_5_SED integer 0 0 3000 no

102 fu5 FU5_KABC_6_raw K-ABC item 6. Dreiecke raw value integer 0 0 3000 no

103 fu5 FU5_KABC_6_SGD integer 0 0 3000 no

104 fu5 FU5_KABC_6_NV integer 0 0 3000 no

105 fu5 FU5_KABC_7_raw K-ABC item 7. Wortreihe raw value integer 0 0 3000 no

106 fu5 FU5_KABC_7_SED integer 0 0 3000 no

107 fu5 FU5_KABC_8_raw K-ABC item 8. Bildhaftes ergänzen raw value integer 0 0 3000 no

108 fu5 FU5_KABC_8_SGD integer 0 0 3000 no

109 fu5 FU5_KABC_8_NV decimal 0 0 3000 no

110 fu5 FU5_KABC_9_raw K-ABC item 9. Räumliches Gedächtnis raw value integer 0 0 3000 no

111 fu5 FU5_KABC_9_SGD integer 0 0 3000 no

112 fu5 FU5_KABC_9_NV integer 0 0 3000 no

113 fu5 FU5_KABC_10_raw K-ABC item 10. Fotoserie raw value decimal 0 0 3000 no

114 fu5 FU5_KABC_10_SGD integer 0 0 3000 no

115 fu5 FU5_KABC_10_NV integer 0 0 3000 no

116 fu5 FU5_KABC_12_raw K-ABC II item 12 raw value integer / integer 0 0 3000 no

117 fu5 FU5_KABC_12_standard integer 0 0 3000 no

118 fu5 FU5_KABC_13_raw integer 0 0 3000 no

119 fu5 FU5_KABC_13_standard integer 0 0 3000 no

120 fu5 FU5_KABC_14_raw integer 0 0 3000 no

121 fu5 FU5_KABC_14_standard integer 0 0 3000 no

122 fu5 FU5_KABC_15_raw integer 0 0 3000 no

123 fu5 FU5_KABC_15_standard integer 0 0 3000 no

124 fu5 FU5_KABC_SED integer 0 0 3000 no

125 fu5 FU5_KABC_SGD integer 0 0 3000 no

126 fu5 FU5_KABC_NV integer 0 0 3000 no

127 fu5 FU5_KABC_FS integer 0 0 3000 no

128 fu5 FU5_KABC_SED_standard integer 0 0 3000 yes 7375

129 fu5 FU5_KABC_SGD_standard integer 0 0 3000 yes 7380

130 fu5 FU5_KABC_SIF_calc integer 0 0 3000 no

131 fu5 FU5_KABC_SIF_standard integer 0 0 3000 yes 7390

132 fu5 FU5_KABC_FS_standard integer 0 0 3000 yes 7395

133 fu5 FU5_KABC_NV_standard integer 0 0 3000 yes 7400

134 fu5 FU5_KABC_comments K-ABC comments text / text_area 3000 yes 7405

135 fu5 FU5_KABC_other K-ABC other decimal 0 0 3000 yes 7410

136 fu5 FU5_KABC_other_specific text / text_field 3000 yes 7415

137 fu5 F5_KABC_GA_corr integer 0 1 3000 no

138 fu5 FU5_KABCII_1_raw K-ABC II item 1. Atlantis raw value decimal 0 150 999 3000 no

139 fu5 FU5_KABCII_2_raw K-ABC II item 2. Konzeptbildung raw value decimal 0 150 999 3000 no

140 fu5 FU5_KABCII_3_raw K-ABC II item 3. Wiedererkennen von Gesichtern raw value decimal 0 150 999 3000 no

141 fu5 FU5_KABCII_4_raw K-ABC II item 4. Geschichten ergänzen raw value integer 0 150 999 3000 no

142 fu5 FU5_KABCII_4_raw_plus boolean 3000 no

143 fu5 FU5_KABCII_5_raw K-ABC II item 5. Zahlen nachsprechen raw value decimal 0 150 999 3000 no

144 fu5 FU5_KABCII_6_raw K-ABC II item 6. Gestaltschliessen raw value integer 0 150 999 3000 no

145 fu5 FU5_KABCII_7_raw K-ABC II item 7. Rover raw value integer 0 150 999 3000 no

146 fu5 FU5_KABCII_8_raw K-ABC II item 8. Atlantis - Abruf nach Intervall raw value integer 0 150 999 3000 no

147 fu5 FU5_KABCII_9_raw K-ABC II item 9. Wortschatz raw value decimal 0 150 999 3000 no

148 fu5 FU5_KABCII_10_raw K-ABC II item 10. Wort- und Sachwissen raw value integer 0 150 999 3000 no

149 fu5 FU5_KABCII_11_raw K-ABC II item 11. Symbole raw value integer 0 150 999 3000 no

150 fu5 FU5_KABCII_12_raw K-ABC II item 12. Dreiecke raw value decimal 0 150 999 3000 no

151 fu5 FU5_KABCII_12_raw_plus boolean 3000 no

152 fu5 FU5_KABCII_13_raw K-ABC II item 13. Bausteine zählen raw value integer 0 150 999 3000 no

153 fu5 FU5_KABCII_14_raw K-ABC II item 14. Wortreihe raw value decimal 0 150 999 3000 no

154 fu5 FU5_KABCII_15_raw K-ABC II item 15. Muster ergänzen raw value decimal 0 150 999 3000 no

155 fu5 FU5_KABCII_15_raw_plus boolean 3000 no

156 fu5 FU5_KABCII_16_raw K-ABC II item 16. Handbewegungen raw value integer 0 150 999 3000 no

157 fu5 FU5_KABCII_17_raw K-ABC II item 17. Symbole - Abruf nach Intervall raw value integer 0 150 999 3000 no

158 fu5 FU5_KABCII_18_raw K-ABC II item 18. Rätsel raw value decimal 0 150 999 3000 no

159 fu5 FU5_KABCII_comments KABCII comments text / text_area 3000 yes 7470

160 fu5 FU5_Wppsi_0 WPPSI IV performed boolean 0 0 9 2019 3000 no

Encoding of values: 0 = no, 1 = yes

161 fu5 FU5_Wppsi_1_raw WPPSI IV item 1 raw value integer 0 34 999 2019 3000 no

162 fu5 FU5_Wppsi_2_raw WPPSI IV item 2 raw value integer 0 29 999 2019 3000 no

163 fu5 FU5_Wppsi_3_raw WPPSI IV item 3 raw value integer 0 26 999 2019 3000 no

164 fu5 FU5_Wppsi_4_raw WPPSI IV item 4 raw value integer 0 66 999 2019 3000 no

165 fu5 FU5_Wppsi_5_raw WPPSI IV item 5 raw value integer 0 35 999 2019 3000 no

166 fu5 FU5_Wppsi_6_raw WPPSI IV item 6 raw value integer 0 40 999 2019 3000 no

167 fu5 FU5_Wppsi_7_raw WPPSI IV item 7 raw value integer 0 27 999 2019 3000 no

168 fu5 FU5_Wppsi_8_raw WPPSI IV item 8 raw value integer 0 96 999 2019 3000 no

169 fu5 FU5_Wppsi_9_raw WPPSI IV item 9 raw value integer 0 20 999 2019 3000 no

170 fu5 FU5_Wppsi_10_raw WPPSI IV item 10 raw value integer 0 38 999 2019 3000 no

171 fu5 FU5_Wppsi_11_raw WPPSI IV item 11 raw value integer 0 43 999 2019 3000 no

172 fu5 FU5_WPPSI_IV_comments Comments text / text_area 3000 yes 7483

173 fu5 FU5_KABCII_Fki_Ref K-ABC II FKI / IFC (calculated) integer 0 150 3000 yes 7516

K-ABC II FKI / IFC reference value according to manual - without age correction for prematurity

174 fu5 FU5_KABCII_Sfi_Ref K-ABC II SFI / INV (calculated) integer 0 150 3000 yes 7517

K-ABC II SFI (Sprachfrei) / INV (non verbal) index value according to manual - without age correction for prematurity

175 fu5 FU5_KABCII_Gsm_Ref K-ABC II Gsm (calculated) integer 0 150 3000 no

K-ABC II Gsm reference value according to manual - without age correction for prematurity

176 fu5 FU5_KABCII_Gf_Ref K-ABC II Gf (calculated) integer 0 150 3000 no

K-ABC II Gf reference value according to manual - without age correction for prematurity

177 fu5 FU5_KABCII_Glr_Ref K-ABC II Glr (calculated) integer 0 150 3000 no

K-ABC II Glr reference value according to manual - without age correction for prematurity

178 fu5 FU5_KABCII_Gv_Ref K-ABC II Gv (calculated) integer 0 150 3000 no

K-ABC II Gv reference value according to manual - without age correction for prematurity

179 fu5 FU5_KABCII_Gc_Ref K-ABC II Gc (calculated) integer 0 150 3000 no

K-ABC II Gc reference value according to manual - without age correction for prematurity

180 fu5 FU5_McCarthy integer 0 0 3000 yes 7520

181 fu5 FU5_NEPSY integer 0 0 3000 yes 7525

182 fu5 FU5_SM_findings Sensory motor findings ordinal / choice_select 0 3 3000 yes 7530

Encoding of values: 0 = not assessed, 1 = no pathological findings, 2 = cerebral palsy, 3 = non-CP neuromotor abnormailty

183 fu5 FU5_CP_Degree Palisano score integer / choice_radio 0 5 3000 yes 7531

see https://en.wikipedia.org/wiki/Gross_Motor_Function_Classification_System

Encoding of values: 0 = Normal (note that child therefore does not qualify for CP), 1 = Level 1, 2 = level 2, 3 = Level 3, 4 = Level 4, 5 = Level 5

184 fu5 FU5_Kindof_CP Type of CP integer / choice_radio 0 4 3000 no

185 fu5 FU5_Spastic_CP Spastic CP ordinal / choice_radio 1 6 2013 yes 7535

Encoding of values: 1 = Monoplegia, 2 = Diplegia, 3 = Triplegia, 4 = Hemiplegia, 5 = Tetraplegia, 6 = Unknown form of CP

186 fu5 FU5_Spastic_CP_2020 Spastic CP (as of 2020) ordinal / choice_radio 0 1 2014 3000 yes 7536

Encoding of values: 0 = Unilateral, 1 = Bilateral

187 fu5 FU5_CP_Spastic_Unilateral_LR Unilateral Spastic CP left or right integer / choice_radio 1 2 2014 3000 yes 7537

Encoding of values: 1 = L, 2 = R

188 fu5 FU5_Dyskinetic_CP Dyskinetic CP ordinal / choice_radio 1 3 3000 yes 7540

Encoding of values: 1 = Dystonic, 2 = Choreathetonic, 3 = Unclassifiable

189 fu5 FU5_Ataxic_CP Ataxic CP ordinal / choice_radio 1 2 2013 yes 7545

Encoding of values: 1 = Ataxia, 2 = Hemitaxia

190 fu5 FU5_Monoplegia_LR Monoplegia left or right integer 1 2 2013 yes 7550

191 fu5 FU5_Hemiplegia_LR Hemiplegia left or right integer 1 2 2013 yes 7555

192 fu5 FU5_CP_calc CP decimal 0 0 3000 no

193 fu5 FU5_CP_suspect Cerebral palsy suspect boolean 0 0 3000 yes 7570

Encoding of values: 0 = no, 1 = yes

194 fu5 FU5_Non_CP_abn1 Non-CP abnormality: tone or reflexes boolean 0 1 3000 yes 7575

Encoding of values: 0 = no, 1 = yes

195 fu5 FU5_Non_CP_abn2 Non-CP abnormality: tone and reflexes, but not CP boolean 0 1 3000 yes 7580

Encoding of values: 0 = no, 1 = yes

196 fu5 FU5_Non_CP_abn3 Non-CP abnormality: Clumsy fine motor performance boolean 0 1 3000 yes 7585

Encoding of values: 0 = no, 1 = yes

197 fu5 FU5_Non_CP_abn4 Non-CP abnormality: Clumsy gross motor performance boolean 0 1 3000 yes 7590

Encoding of values: 0 = no, 1 = yes

198 fu5 FU5_Neurodev0 Other neurodev. Abnormalities: No boolean 0 1 3000 yes 7600

Encoding of values: 0 = no, 1 = yes

199 fu5 FU5_Neurodev1 Other neurodev. Abnormalities: Suspected ADHS boolean 0 1 3000 yes 7605

Encoding of values: 0 = no, 1 = yes

200 fu5 FU5_Neurodev2 Other neurodev. Abnormalities: ADHS (with medication) boolean 0 1 3000 yes 7610

Encoding of values: 0 = no, 1 = yes

201 fu5 FU5_Neurodev3 Other neurodev. Abnormalities: Speech impairment boolean 0 1 3000 yes 7615

Encoding of values: 0 = no, 1 = yes

202 fu5 FU5_Neurodev4 Other neurodev. Abnormalities: Autistic spectrum disorder boolean 0 1 3000 yes 7620

Encoding of values: 0 = no, 1 = yes

203 fu5 FU5_Neurodev5 Other neurodev. Abnormalities: Epilepsy boolean 0 1 3000 yes 7625

Encoding of values: 0 = no, 1 = yes

204 fu5 FU5_Neurodev6 Other neurodev. Abnormalities: Other boolean 0 1 3000 yes 7630

Encoding of values: 0 = no, 1 = yes

205 fu5 FU5_Neurodev_specific Specifics of other text / text_field 3000 yes 7631

206 fu5 FU5_Neurodev9 Other neurodev. Abnormalities: unknown boolean 0 1 2000 3000 yes 7633

Encoding of values: 0 = no, 1 = yes

207 fu5 FU5_Therapy0 Therapy boolean / choice_radio 0 1 9 3000 yes 7635

Encoding of values: 0 = no, 1 = yes

208 fu5 FU5_Therapy1 boolean 0 1 3000 yes 7640

Encoding of values: 0 = no, 1 = yes

209 fu5 FU5_Therapy1_age Physical therapy-age integer 0 120 999 3000 yes 7641

210 fu5 FU5_Therapy1_duration Physical therapy-Duration decimal 0 120 999 3000 yes 7642

211 fu5 FU5_Therapy1_ongoing Physical therapy ongoing boolean 0 1 3000 yes 7643

Encoding of values: 0 = no, 1 = yes

212 fu5 FU5_Therapy1_current Therapy 1 within 6 months of assessment integer 0 1 3000 yes 7644

213 fu5 FU5_Therapy2 Early intervention boolean 0 1 3000 yes 7645

Encoding of values: 0 = no, 1 = yes

214 fu5 FU5_Therapy2_age Early intervention-age integer 0 120 999 3000 yes 7646

215 fu5 FU5_Therapy2_duration Early intervention-Duration integer 0 120 999 3000 yes 7647

216 fu5 FU5_Therapy2_ongoing Early intervention ongoing boolean 0 1 3000 yes 7648

Encoding of values: 0 = no, 1 = yes

217 fu5 FU5_Therapy2_current Therapy 2 within 6 months of assessment integer 0 1 3000 yes 7649

218 fu5 FU5_Therapy3 Occupational therapy boolean 0 1 3000 yes 7650

Encoding of values: 0 = no, 1 = yes

219 fu5 FU5_Therapy3_age Occupational therapy-age integer 0 120 999 3000 yes 7651

220 fu5 FU5_Therapy3_duration Occupational therapy-Duration integer 0 120 999 3000 yes 7652

221 fu5 FU5_Therapy3_ongoing Occupational therapy ongoing boolean 0 1 3000 yes 7653

Encoding of values: 0 = no, 1 = yes

222 fu5 FU5_Therapy3_current Therapy 3 within 6 months of assessment integer 0 1 3000 yes 7654

223 fu5 FU5_Therapy4 Speech and language therapy boolean 0 1 3000 yes 7655

Encoding of values: 0 = no, 1 = yes

224 fu5 FU5_Therapy4_age Speech & language therapy-age integer 0 120 999 3000 yes 7656

225 fu5 FU5_Therapy4_duration Speech & language therapy-Duration integer 0 120 999 3000 yes 7657

226 fu5 FU5_Therapy4_ongoing Speech & language therapy ongoing boolean 0 1 3000 yes 7658

Encoding of values: 0 = no, 1 = yes

227 fu5 FU5_Therapy4_current Therapy 4 within 6 months of assessment integer 0 1 3000 yes 7659

228 fu5 FU5_Therapy5 Psycho-motor therapy boolean 0 1 3000 yes 7660

Encoding of values: 0 = no, 1 = yes

229 fu5 FU5_Therapy5_age Psycho-motor therapy-age integer 0 120 999 3000 yes 7661

230 fu5 FU5_Therapy5_duration Psycho-motor therapy-Duration integer 0 120 999 3000 yes 7662

231 fu5 FU5_Therapy5_ongoing Psycho-motor therapy ongoing boolean 0 1 3000 yes 7663

Encoding of values: 0 = no, 1 = yes

232 fu5 FU5_Therapy5_current Therapy 5 within 6 months of assessment integer 0 1 3000 yes 7664

233 fu5 FU5_Therapy6 Child psychiatry therapy boolean 0 1 3000 yes 7665

Encoding of values: 0 = no, 1 = yes

234 fu5 FU5_Therapy6_age Child psychiatry therapy-age integer 0 120 999 3000 yes 7666

235 fu5 FU5_Therapy6_duration Child psychiatry therapy-Duration integer 0 120 999 3000 yes 7667

236 fu5 FU5_Therapy6_ongoing Child psychiatry therapy ongoing boolean 0 1 3000 yes 7668

Encoding of values: 0 = no, 1 = yes

237 fu5 FU5_Therapy6_current Therapy 6 within 6 months of assessment integer 0 1 3000 yes 7669

238 fu5 FU5_Therapy7 Other therapy boolean 0 1 3000 yes 7670

Encoding of values: 0 = no, 1 = yes

239 fu5 FU5_Therapy7_specific Specifics of other therapy text / text_field 3000 yes 7675

240 fu5 FU5_Therapy7_age Other therapy-age integer 0 120 999 3000 yes 7676

241 fu5 FU5_Therapy7_duration Other therapy-Duration integer 0 120 999 3000 yes 7677

242 fu5 FU5_Therapy7_ongoing Other therapy ongoing boolean 0 1 3000 yes 7678

Encoding of values: 0 = no, 1 = yes

243 fu5 FU5_Therapy7_current Therapy 7 within 6 months of assessment integer 0 1 3000 yes 7679

244 fu5 FU5_Ophtal_date text / text_field 3000 yes 7820

245 fu5 FU5_Ophtaltest integer 0 0 3000 yes 7825

246 fu5 FU5_Visual_problems Visual problems ordinal / choice_radio 0 2 9 3000 yes 7830

Encoding of values: 0 = none (no problems or minor problems not interfering with function), 1 = moderate (e.g. corrective glasses, strabism), 2 = severe (severe visual impairment or blindness), 9 = unknown if visual problems exist

247 fu5 FU5_Visual_problems_glasses Visual problems glasses boolean / choice_radio 0 1 9 3000 yes 7835

Does child wear corrective glasses?

Encoding of values: 0 = no, 1 = yes

248 fu5 FU5_Visus_E_Haken_R E-Haken: right decimal 0 10 999 3000 yes 7840

249 fu5 FU5_Visus_E_Haken_L E-Haken: left decimal 0 10 999 3000 yes 7845

250 fu5 FU5_Visus_Stycar_R Stycar: right decimal 0 10 999 3000 yes 7850

251 fu5 FU5_Visus_Stycar_L Stycar: left decimal 0 10 999 3000 yes 7855

252 fu5 FU5_Lang_test Lang test ordinal / choice_radio 0 2 9 3000 yes 7860

Encoding of values: 0 = poor compliance, 1 = negative, 2 = positive (recognizes at least 1 image reliably), 9 = unknown if performed

253 fu5 FU5_Hearing_problems Hearing problems ordinal / choice_radio 0 2 9 3000 yes 7865

Encoding of values: 0 = none (no problems or minor problem), 1 = moderate (moderate hearing impairment not requiring hearing aids), 2 = severe (hearing aids or cochlear implant), 9 = unknown hearing situation

254 fu5 FU5_Hearing_loss decimal 0 0 3000 yes 7870

255 fu5 FU5_ENT_txt Result of specialist exam text / text_field 3000 yes 7875

256 fu5 FU5_ENT_date Date of specialist exam date 0 0 3000 yes 7880

257 fu5 FU5_Audiometry Audiometry integer / choice_radio 0 3 3000 yes 7885

258 fu5 FU5_Audiometry_specific Abnormal audiometry text / text_field 3000 yes 7890

259 fu5 FU5_Hearing_loss_infection integer 0 0 3000 yes 7895

260 fu5 FU5_ZN_0 Zurich Neuromotorik integer / choice_radio 0 2 3000 yes 7900

Encoding of values: 0 = no, 1 = ZNM1, 2 = ZNM2

261 fu5 FU5_ZN_Haendigkeit ZN Händigkeit ordinal / choice_radio 1 2 9 3000 yes 7905

Encoding of values: 1 = rechts, 2 = links

262 fu5 FU5_ZN_Motivation ZN Motivation ordinal / choice_radio 0 2 9 3000 yes 7910

Encoding of values: 0 = schwach, 1 = mässig, 2 = hoch

263 fu5 FU5_ZN_date ZN Date date 0 0 3000 yes 7915

264 fu5 FU5_ZN_purely_motor ZN Purely motor decimal -10 8 9 3000 yes 7920

265 fu5 FU5_ZN_pegboard ZN Pegboard decimal -10 8 9 3000 yes 7925

266 fu5 FU5_ZN_dynamic_balance ZN Dynamic balance decimal -10 8 9 3000 yes 7930

267 fu5 FU5_ZN_static_balance ZN Static balance decimal -10 8 9 3000 yes 7935

268 fu5 FU5_NDI Neurodevelopmental impairment score ordinal / choice_radio 0 0 9 3000 yes 7940

Encoding of values: 0 = no, 1 = moderate, 2 = severe

269 fu5 FU5_NDI_manual Neurodevelopmental impairment ordinal / choice_radio 0 2 9 3000 yes 7945

Moderate NDI: developmental test 2 standard deviations below norm; or CP with GMFCS 2; or moderate hearing or visual problems

Severe NDI: developmental test 3 standard deviations below norm; or CP with GMFCS 3-5; or severe hearing or visual problems (blindness)

Encoding of values: 0 = normal ND, 1 = moderate NDI, 2 = severe NDI

270 fu5 FU5_NDI_comment Comment to neurodevelopmental impairment classification text / text_area unknown 3000 yes 7950

271 fu5 FU5_Error_report text / text_field 3000 no

272 fu5 FU5_Errors integer 0 0 3000 no

273 fu5 FU5_Last_change date 0 0 3000 no

274 fu5 FU5_DS_status integer 0 0 3000 no

275 fu5 FU5_DS_lockdate date 0 0 3000 no

276 fu5 FU5_KABCII_0 K-ABC II performed boolean 0 0 3000 no

Encoding of values: 0 = no, 1 = yes

277 fu5 FU5_Repeat_surgery Repeat surgery boolean / choice_radio 0 1 9 2019 3000 yes 8040

Encoding of values: 0 = no, 1 = yes

278 fu5 FU5_Catheter_intervention Catheter Intervention boolean / choice_radio 0 1 9 2019 3000 yes 8045

Encoding of values: 0 = no, 1 = yes

279 fu5 FU5_Treat_cardio_name Name of Treating cardiologist text / text_field 2019 3000 yes 8050

280 fu5 FU5_Treat_cardio_email E-mail of cardiologist text / text_field 2019 3000 yes 8055

281 fu5 FU5_Cardiac_medication_diuretics Cardiac Medication: Diuretics boolean 0 1 3000 yes 8060

Encoding of values: 0 = no, 1 = yes

282 fu5 FU5_Cardiac_medication_sildenafil Cardiac Medication: Sildenafil boolean 0 1 3000 yes 8065

Encoding of values: 0 = no, 1 = yes

283 fu5 FU5_Cardiac_medication_ace_inhibitor Cardiac Medication: ACE Inhibitor boolean 0 1 3000 yes 8070

Encoding of values: 0 = no, 1 = yes

284 fu5 FU5_Cardiac_medication_digoxin Cardiac Medication: Digoxin boolean 0 1 3000 yes 8075

Encoding of values: 0 = no, 1 = yes

285 fu5 FU5_Cardiac_medication_beta_blocker Cardiac Medication: Beta-Blocker boolean 0 1 3000 yes 8080

Encoding of values: 0 = no, 1 = yes

286 fu5 FU5_Cardiac_medication_other Cardiac Medication: Other boolean 0 1 3000 yes 8085

Encoding of values: 0 = no, 1 = yes

287 fu5 FU5_Cardiac_medication_other_specific Cardiac Medication: Specifics of other text / text_field 3000 yes 8090

288 fu5 FU5_Gi_tube_feeding Gastrointestinal tube feeding boolean / choice_radio 0 1 9 2019 3000 yes 8095

Encoding of values: 0 = no, 1 = yes

289 fu5 FU5_Cardiac_medication_none Cardiac Medication: None boolean 0 1 3000 yes 8185

Encoding of values: 0 = no, 1 = yes

290 fu5 FU5_Files Test upload text / static_text unknown 3000 no

291 fu5 FU5_Comment Comments text / text_area 3000 no

292 fu5 FU5_Email E-mail of examiner text / text_field 2000 3000 no

293 fu5 FU5_Test_Upload Upload parental assessment form in lieu of recording clinical consultation boolean 0 1 2019 3000 no

During the Covid-19 pandemic, several children could not be invited to a consultation. Instead, test forms were uploaded, e.g. PARCA-R

Encoding of values: 0 = no, 1 = yes

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