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Version of 22.11.2024. Last major change:

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Dataset

Item

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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 fu2 FU2_Files Test upload text / static_text unknown 3000 no

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

Database primary key

4 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

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

Standard SwissNeoNet ID number

6 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

7 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

8 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.

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

Month of birth (random if fully anonymized)

10 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/

11 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

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

Encrypted center number

13 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

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

Year in which child was born

15 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

16 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

17 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)

18 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).

19 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)

20 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

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

See Asp Definitions'

22 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

23 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

24 patient P_FUx_Location text / choice_select 3000 no

25 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.

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

See gestational age in weeks (P_GA_weeks)

27 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)

28 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

29 patient P_Died_in_del ordinal / choice_radio 3000 no

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

includes stillborns and lifeborns

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

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

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

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

33 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.

34 patient P_FU1_location Location of follow-up 1 text / text_field 2000 3000 yes 85

See P_FU2_Location

35 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

36 patient P_FU5_location Location of follow-up 5 text / text_field 2000 3000 yes 95

See P_FU2_Location

37 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

38 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

39 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

40 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

41 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

42 patient F_FU1_status Recruitment status text / text_field 2000 3000 no

43 patient F_FU2_status Recruitment status text / text_field 2000 3000 no

44 patient F_FU5_status Recruitment status text / text_field 2000 3000 no

45 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.

46 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

47 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

48 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

49 patient P_DS_duplicate Original kP integer 2000 3000 yes 615

0 if original dataset, KpPatientId of original if duplicated

50 patient P_DS_lockdate date 3000 no

51 fu2 FU2_Test_Upload Upload parental assessment form in lieu of recording clinical consultation boolean 0 1 2019 3000 yes 2836

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

52 fu2 FU2_Dev_test_age_text text / text_field 3000 no

53 fu2 FU2_MDI_index BSID II MDI index integer 49 151 999 3000 no

Values are between 50 - 150. 49 represents any value below this range, 151 represents any value above this range.

54 fu2 FU2_MDI_diff_calc text / text_field 3000 no

55 fu2 FU2_PDI_index BSID II PDI index integer 49 151 999 3000 no

Values are between 50 - 150. 49 represents any value below this range, 151 represents any value above this range.

56 fu2 FU2_PDI_diff_calc text / text_field 3000 no

57 fu2 FU2_B3_cog_scaled Bayley III Cog scaled score integer 0 0 2010 3000 no

58 fu2 FU2_B3_cog_comp Bayley III Cog composit score integer 0 0 2010 3000 no

59 fu2 FU2_B3_rc_scaled Bayley III RC scaled integer 0 0 2010 3000 no

60 fu2 FU2_B3_ec_scaled Bayley III EC scaled integer 0 0 2010 3000 no

61 fu2 FU2_B3_lang_comp Bayley III Lang composite score integer 0 0 2010 3000 no

62 fu2 FU2_B3_fm_scaled Bayley III FM scaled integer 0 0 2010 3000 no

63 fu2 FU2_B3_gm_scaled Bayley III GM scaled integer 0 0 2010 3000 no

64 fu2 FU2_B3_mot_comp Bayley III Mot composite score integer 0 0 2010 3000 no

65 fu2 FU2_B3_cog_scaled_ref Bayley III cognitive scaled score integer 1 38 2010 3000 yes 3040

66 fu2 FU2_B3_rc_scaled_ref Bayley III RC scaled decimal 1 38 2010 3000 yes 3045

67 fu2 FU2_B3_ec_scaled_ref Bayley III EC scaled integer 1 38 2010 3000 yes 3050

68 fu2 FU2_B3_fm_scaled_ref Bayley III FM scaled integer 1 38 2010 3000 yes 3055

69 fu2 FU2_B3_gm_scaled_ref Bayley III GM scaled integer 1 38 2010 3000 yes 3060

70 fu2 FU2_B3_lang_scaled Bayley III Lang composite score integer 0 0 2010 3000 no

71 fu2 FU2_B3_mot_scaled Bayley III motor scaled decimal 0 0 2010 3000 no

72 fu2 FU2_B3_cog_comp_ref Bayley III cognitive composite decimal 40 155 2010 3000 yes 3075

73 fu2 FU2_B3_lang_comp_ref Bayley III language composite decimal 40 155 2010 3000 yes 3080

74 fu2 FU2_B3_mot_comp_ref Bayley III motor composite decimal 40 155 2010 3000 yes 3085

75 fu2 FU2_GQ_nomotor_calc Griffiths quotient w/o motor component decimal 5 151 3000 yes 3145

76 fu2 FU2_Spastic_CP Spastic CP ordinal / choice_radio 1 6 2013 yes 3155

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

77 fu2 FU2_Ataxic_CP Ataxic CP ordinal / choice_radio 1 2 2013 yes 3165

Encoding of values: 1 = Ataxia, 2 = Hemitaxia

78 fu2 FU2_Monoplegia_LR Monoplegia left or right integer 1 2 2013 yes 3170

79 fu2 FU2_Hemiplegia_LR Hemiplegia left or right integer 1 2 2013 yes 3175

80 fu2 FU2_Visual_problems_glasses Visual problems integer 0 0 3000 no

81 fu2 FU2_Visus_E_Haken_R E-Haken: right decimal 0 0 3000 no

82 fu2 FU2_Visus_E_Haken_L E-Haken: left decimal 0 0 3000 no

83 fu2 FU2_Visus_Stycar_R Stycar: right decimal 0 0 3000 no

84 fu2 FU2_Visus_Stycar_L Stycar: left decimal 0 0 3000 no

85 fu2 FU2_Audiometry lang test integer 0 0 3000 yes 3370

86 fu2 FU2_Audiometry_specific hearing problems integer 0 0 3000 yes 3375

87 fu2 FU2_ENT_txt result of specialist exam text / text_field 3000 yes 3385

88 fu2 FU2_ENT_date date of specialist exam date 0 0 3000 no

89 fu2 FU2_NDI Neurodevelopmental impairment score ordinal / choice_radio 0 0 9 3000 yes 3415

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)

We use calculated thresholds for Bayley III as discussed at Level III / FU meeting on Nov. 25, 2020. See here for an exact overview

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

90 fu2 FU2_Last_change date 0 0 3000 no

91 fu2 FU2_DS_status integer 0 0 3000 no

92 fu2 FU2_Error_report fu2ErrorReport / 0 0 3000 no

93 fu2 FU2_Errors integer 0 0 3000 no

94 fu2 FU2_Errorlist_ignore integer 0 0 3000 no

95 fu2 FU2_Check integer 0 2 9 3000 no

96 fu2 FU2_Date date 2000 3000 no

97 fu2 FU2_Age_calc Corrected age at FU decimal 0 96 3000 yes 3471

98 fu2 FU2_Examiner1 Examiner: Physician boolean 0 1 3000 yes 3472

Encoding of values: 0 = no, 1 = yes

99 fu2 FU2_Examiner2 Examiner: Psychologist boolean 0 1 3000 yes 3473

Encoding of values: 0 = no, 1 = yes

100 fu2 FU2_Examiner3 Examiner: Physiotherapist boolean 0 1 3000 yes 3474

Encoding of values: 0 = no, 1 = yes

101 fu2 FU2_Examiner4 Examiner: Pediatrician in private practice boolean 0 1 3000 yes 3475

Encoding of values: 0 = no, 1 = yes

102 fu2 FU2_Examiner5 Examiner: Other boolean 0 1 3000 yes 3476

Encoding of values: 0 = no, 1 = yes

103 fu2 FU2_Examiner5_specific Examiner: Specifics of other text / text_field 3000 yes 3477

104 fu2 FU2_Examiner_name Name of examiner text / text_field 3000 yes 3478

105 fu2 SES_Education_mother2 Highest education mother text / choice_select unknown 2000 3000 no

106 fu2 SES_Occupation_mother2 Current occupation mother text / text_field unknown 2000 3000 no

107 fu2 SES_Score_mother2 SES Score of mother integer 1 6 9 2000 3000 no

108 fu2 SES_Education_father2 Training basis for current occupation father text / choice_select unknown 2000 3000 no

109 fu2 SES_Occupation_father2 Current occupation father text / text_field unknown 2000 3000 no

110 fu2 SES_Score_father2 SES Score of father text / integer 9 2000 3000 no

111 fu2 FU2_Weight Weight decimal 4 25 99 3000 yes 3485

112 fu2 FU2_Weight_zscore Weight z-score Braegger et al. 2011 decimal / static_text -10 10 3000 yes 3486

113 fu2 FU2_Length Length decimal 50 110 999 3000 yes 3487

114 fu2 FU2_Length_zscore length z-score Braegger et al. 2011 decimal / static_text -10 10 3000 yes 3488

115 fu2 FU2_Dev_test Development test ordinal / choice_select 0 4 3000 yes 3488

Encoding of values: 0 = not performed, 1 = Griffiths, 2 = Bayley II, 4 = Bayley III

116 fu2 FU2_Head_circ Head circumference decimal 40 60 99 3000 yes 3489

117 fu2 FU2_poorComp Poor complience boolean 0 1 3000 yes 3489

Encoding of values: 0 = no, 1 = yes

118 fu2 FU2_Head_circ_zscore head circumference z-score Braegger et al. 2011 decimal / static_text -10 10 3000 yes 3490

119 fu2 FU2_Dev_test_date Development test date date 0 0 3000 yes 3490

120 fu2 FU2_Dev_test_age Age at developmental test decimal 0 96 3000 yes 3491

121 fu2 FU2_MDI_raw BSID II MDI raw integer 0 200 999 3000 yes 3492

122 fu2 FU2_PDI_raw BSID II PDI raw integer 0 200 999 3000 yes 3493

123 fu2 FU2_MDI_index_ref BSID II MDI index integer 49 151 999 3000 yes 3494

124 fu2 FU2_PDI_index_ref BSID II PDI index integer 49 151 999 3000 yes 3495

Values are between 50 - 150. 49 represents any value below this range, 151 represents any value above this range.

125 fu2 FU2_B3_cog_raw Bayley III Cog. raw integer 1 91 999 2010 3000 yes 3496

126 fu2 FU2_B3_rc_raw Bayley III RC raw integer 1 91 999 2010 3000 yes 3497

127 fu2 FU2_B3_ec_raw Bayley III EC raw integer 1 91 999 2010 3000 yes 3498

128 fu2 FU2_B3_fm_raw Bayley III FM raw integer 1 91 999 2010 3000 yes 3499

129 fu2 FU2_B3_gm_raw Bayley III GM raw integer 1 91 999 2010 3000 yes 3500

130 fu2 FU2_Griffith_motor_raw Griffiths raw: motor decimal 0 200 999 3000 yes 3501

131 fu2 FU2_Griffith_social_raw Griffiths raw: social decimal 0 200 999 3000 yes 3502

132 fu2 FU2_Griffith_hearing_raw Griffiths raw: hearing decimal 0 200 999 3000 yes 3503

133 fu2 FU2_Griffith_eye_raw Griffiths raw: eye decimal 0 200 999 3000 yes 3504

134 fu2 FU2_Griffith_cognition_raw Griffiths raw: cognition decimal 0 200 999 3000 yes 3505

135 fu2 FU2_Griffith_motor_index Griffiths index: motor decimal 0 200 999 3000 yes 3506

136 fu2 FU2_Griffith_social_index Griffiths index: social decimal 0 200 999 3000 yes 3507

137 fu2 FU2_Griffith_hearing_index Griffiths index: hearing decimal 0 200 999 3000 yes 3508

138 fu2 FU2_Griffith_eye_index Griffiths index: eye decimal 0 200 999 3000 yes 3509

139 fu2 FU2_Griffith_cognition_index Griffiths index: cognition decimal 0 200 999 3000 yes 3510

140 fu2 FU2_GQ_tot Griffiths quotient decimal 5 151 999 3000 yes 3511

Values are between 50 - 150. 49 represents any value below this range, 151 represents any value above this range.

141 fu2 FU2_Dev_test_comments Comments text / text_area 3000 yes 3512

142 fu2 FU2_SM_findings Sensory motor findings ordinal / choice_select 0 3 3000 yes 3513

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

143 fu2 FU2_CP_suspect CP suspect boolean 0 1 3000 yes 3514

Encoding of values: 0 = no, 1 = yes

144 fu2 FU2_CP_Degree Palisano score integer / choice_radio 1 5 9 3000 yes 3515

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

145 fu2 FU2_Kindof_CP Type of CP integer / choice_radio 0 4 3000 yes 3516

146 fu2 FU2_Spastic_CP_2020 Spastic CP (as of 2020) ordinal / choice_radio 0 1 2014 3000 yes 3517

Encoding of values: 0 = Unilateral, 1 = Bilateral

147 fu2 FU2_CP_Spastic_Unilateral_LR Unilateral Spastic CP left or right integer / choice_radio 1 2 2014 3000 yes 3518

Encoding of values: 1 = L, 2 = R

148 fu2 FU2_Dyskinetic_CP Dyskinetic CP ordinal / choice_radio 1 3 3000 yes 3519

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

149 fu2 FU2_Non_CP_abn1 Non-CP abnormality: tone or reflexes boolean 0 1 3000 yes 3520

Encoding of values: 0 = no, 1 = yes

150 fu2 FU2_Non_CP_abn2 Non-CP abnormality: tone and reflexes, but not CP boolean 0 1 3000 yes 3521

Encoding of values: 0 = no, 1 = yes

151 fu2 FU2_Non_CP_abn3 Non-CP abnormality: Clumsy fine motor performance boolean 0 1 3000 yes 3522

Encoding of values: 0 = no, 1 = yes

152 fu2 FU2_Non_CP_abn4 Non-CP abnormality: Clumsy gross motor performance boolean 0 1 3000 yes 3523

Encoding of values: 0 = no, 1 = yes

153 fu2 FU2_Neurodev Other neurodev. abnormalities boolean / choice_radio 0 1 9 3000 yes 3525

Encoding of values: 0 = no, 1 = yes

154 fu2 FU2_Neurodev_specific Specifics of other text / text_area 3000 yes 3525

155 fu2 FU2_Therapy Therapy boolean / choice_radio 0 1 9 3000 yes 3527

Encoding of values: 0 = no, 1 = yes

156 fu2 FU2_Therapy1 Physical therapy boolean 0 1 3000 yes 3528

Encoding of values: 0 = no, 1 = yes

157 fu2 FU2_Therapy1_age Physical therapy-age integer 0 36 999 3000 yes 3529

158 fu2 FU2_Therapy1_ongoing Physical therapy ongoing boolean 0 1 3000 yes 3530

Encoding of values: 0 = no, 1 = yes

159 fu2 FU2_Therapy1_duration Physical therapy-Duration integer 0 24 999 3000 yes 3531

160 fu2 FU2_Therapy2 Early intervention boolean 0 1 3000 yes 3532

Encoding of values: 0 = no, 1 = yes

161 fu2 FU2_Therapy2_age Early intervention-age integer 0 36 999 3000 yes 3533

162 fu2 FU2_Therapy2_ongoing Early intervention ongoing boolean 0 1 3000 yes 3534

Encoding of values: 0 = no, 1 = yes

163 fu2 FU2_Therapy2_duration Early intervention-Duration integer 0 24 999 3000 yes 3535

164 fu2 FU2_Therapy3 Occupational therapy boolean 0 1 3000 yes 3536

Encoding of values: 0 = no, 1 = yes

165 fu2 FU2_Therapy3_age Occupational therapy-age integer 0 36 999 3000 yes 3537

166 fu2 FU2_Therapy3_ongoing Occupational therapy ongoing boolean 0 1 3000 yes 3538

Encoding of values: 0 = no, 1 = yes

167 fu2 FU2_Therapy3_duration Occupational therapy-Duration integer 0 24 999 3000 yes 3539

168 fu2 FU2_Therapy6 Child psychiatry therapy boolean 0 1 3000 yes 3540

Encoding of values: 0 = no, 1 = yes

169 fu2 FU2_Therapy6_age Child psychiatry therapy-age integer 0 36 999 3000 yes 3541

170 fu2 FU2_Therapy6_ongoing Child psychiatry therapy ongoing boolean 0 1 3000 yes 3542

Encoding of values: 0 = no, 1 = yes

171 fu2 FU2_Therapy6_duration Child psychiatry therapy-Duration integer 0 24 999 3000 yes 3543

172 fu2 FU2_Therapy7 Other therapy boolean 0 1 3000 yes 3544

Encoding of values: 0 = no, 1 = yes

173 fu2 FU2_Therapy7_specific Specifics of other therapy text / text_field 3000 yes 3545

174 fu2 FU2_Therapy7_age Other therapy-age integer 0 36 999 3000 yes 3546

175 fu2 FU2_Therapy7_ongoing Other therapy ongoing boolean 0 1 3000 yes 3547

Encoding of values: 0 = no, 1 = yes

176 fu2 FU2_Therapy7_duration Other therapy-Duration integer 0 24 999 3000 yes 3548

177 fu2 FU2_Visual_problems Visual problems ordinal / choice_radio 0 2 9 3000 yes 3549

Encoding of values: 0 = none, 1 = moderate, 2 = severe

178 fu2 FU2_Lang_test Lang test ordinal / choice_radio 0 2 9 3000 yes 3550

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

179 fu2 FU2_Hearing_problems Hearing problems ordinal / choice_radio 0 2 9 3000 yes 3551

Encoding of values: 0 = none, 1 = moderate, 2 = severe

180 fu2 FU2_Rehosp Rehospitalization ordinal / choice_radio 0 2 9 3000 yes 3552

Encoding of values: 0 = never, 1 = once, 2 = several times

181 fu2 FU2_Rehosp_specific Specifics to rehospitalization text / text_area 3000 yes 3553

182 fu2 FU2_Ropsurg Surgery for ROP boolean / choice_radio 0 1 9 3000 yes 3554

Encoding of values: 0 = no, 1 = yes

183 fu2 FU2_VPshunt VP shunt boolean / choice_radio 0 1 9 3000 yes 3555

Encoding of values: 0 = no, 1 = yes

184 fu2 FU2_Comment Comments text / text_area 3000 yes 3556

185 fu2 FU2_Email E-mail of examiner text / text_field 3000 no

186 fu2 FU2_DS_lockdate date 0 0 3000 no

187 fu2 FU2_NDI_manual Neurodevelopmental impairment ordinal / choice_radio 0 2 9 3000 no

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

188 fu2 FU2_NDI_comment Comment to neurodevelopmental impairment classification text / text_area unknown 3000 no

189 fu2 FU2_Repeat_surgery Surgery for ROP boolean / choice_radio 0 1 9 2019 3000 no

Encoding of values: 0 = no, 1 = yes

190 fu2 FU2_Catheter_intervention Catheter Intervention boolean / choice_radio 0 1 9 2019 3000 no

Encoding of values: 0 = no, 1 = yes

191 fu2 FU2_Treat_cardio_name Name of Treating cardiologist text / text_field 2019 3000 yes 5580

192 fu2 FU2_Treat_cardio_email E-mail of cardiologist text / text_field 2019 3000 yes 5585

193 fu2 FU2_Cardiac_medication_none Cardiac Medication: None boolean 0 1 3000 yes 5589

Encoding of values: 0 = no, 1 = yes

194 fu2 FU2_Cardiac_medication_diuretics Cardiac Medication: Diuretics boolean 0 1 3000 yes 5590

Encoding of values: 0 = no, 1 = yes

195 fu2 FU2_Cardiac_medication_sildenafil Cardiac Medication: Sildenafil boolean 0 1 3000 yes 5595

Encoding of values: 0 = no, 1 = yes

196 fu2 FU2_Cardiac_medication_ace_inhibitor Cardiac Medication: ACE Inhibitor boolean 0 1 3000 yes 5600

Encoding of values: 0 = no, 1 = yes

197 fu2 FU2_Cardiac_medication_digoxin Cardiac Medication: Digoxin boolean 0 1 3000 yes 5605

Encoding of values: 0 = no, 1 = yes

198 fu2 FU2_Cardiac_medication_beta_blocker Cardiac Medication: Beta-Blocker boolean 0 1 3000 yes 5610

Encoding of values: 0 = no, 1 = yes

199 fu2 FU2_Cardiac_medication_other Cardiac Medication: Other boolean 0 1 3000 yes 5615

Encoding of values: 0 = no, 1 = yes

200 fu2 FU2_Cardiac_medication_other_specific Cardiac Medication: Specifics of other text / text_field 3000 yes 5625

201 fu2 FU2_Gi_tube_feeding Gastrointestinal tube feeding boolean / choice_radio 0 1 9 2019 3000 no

Encoding of values: 0 = no, 1 = yes

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