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Version of 22.11.2024. Last major change:

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

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

2 fu2 fu1NdiComment Test upload text / static_text unknown 3000 no

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

Database primary key

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

Describes which registry patient belongs to:
MNDS - minimal neonatal dataset (all infants < 32 weeks gestational age or <1501g birth weight)
B34 - dataset of all infants 32 0/7 weeks to 33 6/7 weeks gestation (excluding infants born <1501g birth weight - see MNDS)
ASP - all infants with hypoxic ischemic encephalopathy
OS1 - all infants with severe congenital heart disease, HLM OP < 6 weeks of life, HLHS with Hybrid procedure. OS2 - all infants with severe congenital heart disease, HLM OP < 6 weeks of life, HLHS with Hybrid procedure. OS3 - all infants with severe congenital heart disease, HLM OP < 6 weeks of life, HLHS with Hybrid procedure. FU1 - Follow-Up after 1 year FU2 - Follow-Up after 2 years FU5 - Follow-Up after 5 years SDQ - Strength and Difficulties Questionnaire FUP - Parental questionnaire

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

Standard SwissNeoNet ID number

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

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

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

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

1 = SwissNeoNet informed consent or Hospital GC with UNENCRYPTED data transfer: date of birth can be collected
2 = Patient informed but IC not received: if there is no informed consent available but parents have been informed that data will be collected for research and they did not object, the hospital can send data with its own patient or case number as identifier.
3 = Anonymized data transfer (request for IC not possible due to early death): if parents neither signed the informed consent form nor were previously informed, or if they reject data collection (veto), data must be entered completely anonymized. Please make sure that this option is not used due to lack of administrative effort because such data cannot be corrected, changed or tested for duplicate entries at a later date because there is no means of identification and data cannot be used for research if it would have been possible to obtain consent!
4 = Hospital General Consent with ENCRYPTED data transfer. In such a case, patient data can be sent to SwissNeoNet encrypted using patient or case number.
5 = Child born prior to Human Research Act, i.e. < 2015 (prospective data collection stopped)
6 = Informed consent status unknown at follow-up (stalled option - status must be known at data entry) See Forms for more details on informed consent

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

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

day / month / year
(Year of birth) If parents do not sign informed consent, this item will not be collected. Record Year of birth and use patient number as identifier.

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

Month of birth (random if fully anonymized)

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

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

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

Registry selector

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

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

Encrypted center number

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

Study group selector - ask Administrator for current specification.

Encoding of values: 0 = no, 1 = yes

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

Year in which child was born

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

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

Encoding of values: 0 = no, 1 = yes

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

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

Encoding of values: 0 = no, 1 = yes

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

Enter a unique patient identifier for your hospital.
Mandatory, if parents informed but neither return informed consent nor veto data collection.
Leave blank if complete anonymity required (will be deleted by system)

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

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

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

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

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

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

Hospital where infant is born, not place where parents live

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

See Asp Definitions'

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

inborn/outborn

Answer "Inborn" if the infant was delivered at your center.
Answer "Outborn" if the infant was delivered outside your center. Infants transferred between delivery room of one clinic to intensive care unit of a neighboring clinic do not count as outborn. When completing the Network data forms for outborn infants, use all information available from the hospital that transferred the infant to your center as well as from your own hospital.

Encoding of values: 1 = inborn, 2 = outborn

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

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

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

24 patient pFuxLocation text / choice_select 3000 no

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

Record the best estimate of gestational age at birth in weeks and days using the following hierarchy:

Obstetrical measures based on last menstrual period, obstetrical parameters, and prenatal ultrasound as recorded in the maternal chart.
Neonatologist’s estimate based on physical criteria, neurologic examination, combined physical and gestational age exam (Ballard or Dubowitz), or examination of the lens.

The best estimate should be recorded in weeks and days. In instances when the best estimate of gestational age is an exact number of weeks, enter the number of weeks in the space provided for weeks and enter “0” in the space provided for days. Do not leave the number of days blank.

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

See gestational age in weeks (P_GA_weeks)

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

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

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

female or male or non-determinable at birth

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

29 patient pDiedInDel ordinal / choice_radio 3000 no

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

includes stillborns and lifeborns

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

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

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

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

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

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

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

See P_FU2_Location

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

(Not required when child died)
If child will receive a follow up examination by specialized a developmental pediatrician, please specify the center (e.g., "1 Lausanne CHUV")

1 Lausanne CHUV
2 Geneva HUG
3 Berne Insel
4 Basel UKBB
5 Aarau Kinderklinik
6 Lucerne KISPI
7 Chur Kinderklinik
8 Zuich KISPI
9 St. Gallen KISPI
10 Ticino
11 Muensterlingen
12 Winterthur
13 Fribourg
14 Bienne
15 Neuchatel
16 Solothurn
17 Baden

else specify follow-up using one of the codes below:

90 other
91 private pediatrician
92 child has moved
93 parents refuse
94 non-Swiss resident
95 child died
96 fu omitted
97 fu stopped
98 record outdated
99 unknown loss to FU

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

See P_FU2_Location

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

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

Encoding of values: 0 = no, 1 = yes

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

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

Encoding of values: 0 = no, 1 = yes

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

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

Encoding of values: 0 = no, 1 = yes

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

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

Encoding of values: 0 = no, 1 = yes

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

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

Encoding of values: 0 = no, 1 = yes

42 patient pFu1Status Recruitment status text / text_field 2000 3000 no

43 patient pFu2Status Recruitment status text / text_field 2000 3000 no

44 patient pFu5Status Recruitment status text / text_field 2000 3000 no

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

Birth weight z-score based on reference data provided by Voigt M, Fusch C, Olbertz D, Hartmann K, Rochow N, Renken C, et al. Analyse des Neugeborenenkollektivs der Bundesrepublik Deutschland – 12.Mitteilung: Vorstellung engmaschiger Perzentilwerte (-kurven) für die Körpermasse Neugeborener. Geburtsh Frauenheilk. 2006; 66: 956–970.

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

Small for gestational age: Birth weight below the 10th percentile for gestational age based on reference data provided by Voigt M, Fusch C, Olbertz D, Hartmann K, Rochow N, Renken C, et al. Analyse des Neugeborenenkollektivs der Bundesrepublik Deutschland – 12.Mitteilung: Vorstellung engmaschiger Perzentilwerte (-kurven) für die Körpermasse Neugeborener. Geburtsh Frauenheilk. 2006; 66: 956–970.

Encoding of values: 0 = no, 1 = yes

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

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

Encoding of values: 0 = no, 1 = yes

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

SES is calculated according to Largo et al. (1990, Dev. Med. Child Neur., 32:30-45) by means of a six-point score of both maternal education and paternal occupation. The lowest possible SES score for either the mother or the father is 1, the highest 6. The overall SES score is a simple addition of the 2 individual scores resulting in a value between 2 and 12.

In 2018, coding was standardized to synchronize areas of profession with years of education. Please use the following SES Scoring Table.

Mother's highest education (1 - 6) + Father's current occupation (1 - 6) = SES total score (2 - 12).

Classification according to education or duration of education (mother: acquired, father: current situation)

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

Note: For professionals who manage more than 10 workers in their own firm, as head of division, site manager or production manager, use the classification 'manager' which corresponds to category 2.

Extended help in German or French

49 patient duplicate Original kP integer 2000 3000 yes 615

0 if original dataset, KpPatientId of original if duplicated

50 patient pDsLockdate date 3000 no

51 fu2 fu2TestUpload 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 fu2DevTestAgeText text / text_field 3000 no

53 fu2 fu2MdiIndex 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 fu2MdiDiffCalc text / text_field 3000 no

55 fu2 fu2PdiIndex 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 fu2PdiDiffCalc text / text_field 3000 no

57 fu2 fu2B3CogScaled Bayley III Cog scaled score integer 0 0 2010 3000 no

58 fu2 fu2B3CogComp Bayley III Cog composit score integer 0 0 2010 3000 no

59 fu2 fu2B3RcScaled Bayley III RC scaled integer 0 0 2010 3000 no

60 fu2 fu2B3EcScaled Bayley III EC scaled integer 0 0 2010 3000 no

61 fu2 fu2B3LangComp Bayley III Lang composite score integer 0 0 2010 3000 no

62 fu2 fu2B3FmScaled Bayley III FM scaled integer 0 0 2010 3000 no

63 fu2 fu2B3GmScaled Bayley III GM scaled integer 0 0 2010 3000 no

64 fu2 fu2B3MotCompRef Bayley III Mot composite score integer 0 0 2010 3000 no

65 fu2 fu2B3CogScaledRef Bayley III cognitive scaled score integer 1 38 2010 3000 yes 3040

66 fu2 fu2B3RcScaledRef Bayley III RC scaled decimal 1 38 2010 3000 yes 3045

67 fu2 fu2B3EcScaledRef Bayley III EC scaled integer 1 38 2010 3000 yes 3050

68 fu2 fu2B3FmScaledRef Bayley III FM scaled integer 1 38 2010 3000 yes 3055

69 fu2 fu2B3GmScaledRef Bayley III GM scaled integer 1 38 2010 3000 yes 3060

70 fu2 fu2B3LangScaled Bayley III Lang composite score integer 0 0 2010 3000 no

71 fu2 fu2B3MotScaled Bayley III motor scaled decimal 0 0 2010 3000 no

72 fu2 b3cog Bayley III cognitive composite decimal 40 155 2010 3000 yes 3075

73 fu2 b3lang Bayley III language composite decimal 40 155 2010 3000 yes 3080

74 fu2 b3mot Bayley III motor composite decimal 40 155 2010 3000 yes 3085

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

76 fu2 fu2SpasticCp 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 fu2AtaxicCp Ataxic CP ordinal / choice_radio 1 2 2013 yes 3165

Encoding of values: 1 = Ataxia, 2 = Hemitaxia

78 fu2 fu2MonoplegiaLr Monoplegia left or right integer 1 2 2013 yes 3170

79 fu2 fu2HemiplegiaLr Hemiplegia left or right integer 1 2 2013 yes 3175

80 fu2 fu2VisualProblemsGlasses Visual problems integer 0 0 3000 no

81 fu2 fu2VisusEHakenR E-Haken: right decimal 0 0 3000 no

82 fu2 fu2VisusEHakenL E-Haken: left decimal 0 0 3000 no

83 fu2 fu2VisusStycarR Stycar: right decimal 0 0 3000 no

84 fu2 fu2VisusStycarL Stycar: left decimal 0 0 3000 no

85 fu2 fu2Audiometry lang test integer 0 0 3000 yes 3370

86 fu2 fu2AudiometrySpecific hearing problems integer 0 0 3000 yes 3375

87 fu2 fu2EntTxt result of specialist exam text / text_field 3000 yes 3385

88 fu2 fu2EntDate date of specialist exam date 0 0 3000 no

89 fu2 ndi2 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 fu2LastChange date 0 0 3000 no

91 fu2 fu2DsStatus integer 0 0 3000 no

92 fu2 fu2ErrorReport fu2ErrorReport / 0 0 3000 no

93 fu2 fu2Errors integer 0 0 3000 no

94 fu2 fu2ErrorlistIgnore integer 0 0 3000 no

95 fu2 fu2Check integer 0 2 9 3000 no

96 fu2 fu2Date date 2000 3000 no

97 fu2 fu2age Corrected age at FU decimal 0 96 3000 yes 3471

98 fu2 fu2Examiner1 Examiner: Physician boolean 0 1 3000 yes 3472

Encoding of values: 0 = no, 1 = yes

99 fu2 fu2Examiner2 Examiner: Psychologist boolean 0 1 3000 yes 3473

Encoding of values: 0 = no, 1 = yes

100 fu2 fu2Examiner3 Examiner: Physiotherapist boolean 0 1 3000 yes 3474

Encoding of values: 0 = no, 1 = yes

101 fu2 fu2Examiner4 Examiner: Pediatrician in private practice boolean 0 1 3000 yes 3475

Encoding of values: 0 = no, 1 = yes

102 fu2 fu2Examiner5 Examiner: Other boolean 0 1 3000 yes 3476

Encoding of values: 0 = no, 1 = yes

103 fu2 fu2Examiner5Specific Examiner: Specifics of other text / text_field 3000 yes 3477

104 fu2 fu2ExaminerName Name of examiner text / text_field 3000 yes 3478

105 fu2 sesEducationMother2 Highest education mother text / choice_select unknown 2000 3000 no

106 fu2 sesOccupationMother2 Current occupation mother text / text_field unknown 2000 3000 no

107 fu2 sesScoreMother2 SES Score of mother integer 1 6 9 2000 3000 no

108 fu2 sesEducationFather2 Training basis for current occupation father text / choice_select unknown 2000 3000 no

109 fu2 sesOccupationFather2 Current occupation father text / text_field unknown 2000 3000 no

110 fu2 sesScoreFather2 SES Score of father text / integer 9 2000 3000 no

111 fu2 fu2Weight Weight decimal 4 25 99 3000 yes 3485

112 fu2 fu2WeightZscore Weight z-score Braegger et al. 2011 decimal / static_text -10 10 3000 yes 3486

113 fu2 fu2Length Length decimal 50 110 999 3000 yes 3487

114 fu2 fu2LengthZscore length z-score Braegger et al. 2011 decimal / static_text -10 10 3000 yes 3488

115 fu2 devtest 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 fu2HeadCirc Head circumference decimal 40 60 99 3000 yes 3489

117 fu2 poorcomp Poor complience boolean 0 1 3000 yes 3489

Encoding of values: 0 = no, 1 = yes

118 fu2 fu2HeadCircZscore head circumference z-score Braegger et al. 2011 decimal / static_text -10 10 3000 yes 3490

119 fu2 fu2DevTestDate Development test date date 0 0 3000 yes 3490

120 fu2 fu2DevTestAge Age at developmental test decimal 0 96 3000 yes 3491

121 fu2 fu2MdiRaw BSID II MDI raw integer 0 200 999 3000 yes 3492

122 fu2 fu2PdiRaw BSID II PDI raw integer 0 200 999 3000 yes 3493

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

124 fu2 pdi 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 fu2B3CogRaw Bayley III Cog. raw integer 1 91 999 2010 3000 yes 3496

126 fu2 fu2B3RcRaw Bayley III RC raw integer 1 91 999 2010 3000 yes 3497

127 fu2 fu2B3EcRaw Bayley III EC raw integer 1 91 999 2010 3000 yes 3498

128 fu2 fu2B3FmRaw Bayley III FM raw integer 1 91 999 2010 3000 yes 3499

129 fu2 fu2B3GmRaw Bayley III GM raw integer 1 91 999 2010 3000 yes 3500

130 fu2 fu2GriffithMotorRaw Griffiths raw: motor decimal 0 200 999 3000 yes 3501

131 fu2 fu2GriffithSocialRaw Griffiths raw: social decimal 0 200 999 3000 yes 3502

132 fu2 fu2GriffithHearingRaw Griffiths raw: hearing decimal 0 200 999 3000 yes 3503

133 fu2 fu2GriffithEyeRaw Griffiths raw: eye decimal 0 200 999 3000 yes 3504

134 fu2 fu2GriffithCognitionRaw Griffiths raw: cognition decimal 0 200 999 3000 yes 3505

135 fu2 fu2GriffithMotorIndex Griffiths index: motor decimal 0 200 999 3000 yes 3506

136 fu2 fu2GriffithSocialIndex Griffiths index: social decimal 0 200 999 3000 yes 3507

137 fu2 fu2GriffithHearingIndex Griffiths index: hearing decimal 0 200 999 3000 yes 3508

138 fu2 fu2GriffithEyeIndex Griffiths index: eye decimal 0 200 999 3000 yes 3509

139 fu2 fu2GriffithCognitionIndex Griffiths index: cognition decimal 0 200 999 3000 yes 3510

140 fu2 gq 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 fu2DevTestComments Comments text / text_area 3000 yes 3512

142 fu2 sm2 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 fu2CpSuspect CP suspect boolean 0 1 3000 yes 3514

Encoding of values: 0 = no, 1 = yes

144 fu2 cp2degree Palisano score integer / choice_radio 1 5 9 3000 yes 3515

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

145 fu2 fu2kindofCP Type of CP integer / choice_radio 0 4 3000 yes 3516

146 fu2 fu2SpasticCp2020 Spastic CP (as of 2020) ordinal / choice_radio 0 1 2014 3000 yes 3517

Encoding of values: 0 = Unilateral, 1 = Bilateral

147 fu2 fu2CPSpasticUnilateralLr Unilateral Spastic CP left or right integer / choice_radio 1 2 2014 3000 yes 3518

Encoding of values: 1 = L, 2 = R

148 fu2 fu2DyskineticCp Dyskinetic CP ordinal / choice_radio 1 3 3000 yes 3519

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

149 fu2 fu2NonCpAbn1 Non-CP abnormality: tone or reflexes boolean 0 1 3000 yes 3520

Encoding of values: 0 = no, 1 = yes

150 fu2 fu2NonCpAbn2 Non-CP abnormality: tone and reflexes, but not CP boolean 0 1 3000 yes 3521

Encoding of values: 0 = no, 1 = yes

151 fu2 fu2NonCpAbn3 Non-CP abnormality: Clumsy fine motor performance boolean 0 1 3000 yes 3522

Encoding of values: 0 = no, 1 = yes

152 fu2 fu2NonCpAbn4 Non-CP abnormality: Clumsy gross motor performance boolean 0 1 3000 yes 3523

Encoding of values: 0 = no, 1 = yes

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

Encoding of values: 0 = no, 1 = yes

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

155 fu2 therapy2 Therapy boolean / choice_radio 0 1 9 3000 yes 3527

Encoding of values: 0 = no, 1 = yes

156 fu2 fu2Therapy1 Physical therapy boolean 0 1 3000 yes 3528

Encoding of values: 0 = no, 1 = yes

157 fu2 fu2Therapy1Age Physical therapy-age integer 0 36 999 3000 yes 3529

158 fu2 fu2Therapy1Ongoing Physical therapy ongoing boolean 0 1 3000 yes 3530

Encoding of values: 0 = no, 1 = yes

159 fu2 fu2Therapy1Duration Physical therapy-Duration integer 0 24 999 3000 yes 3531

160 fu2 fu2Therapy2 Early intervention boolean 0 1 3000 yes 3532

Encoding of values: 0 = no, 1 = yes

161 fu2 fu2Therapy2Age Early intervention-age integer 0 36 999 3000 yes 3533

162 fu2 fu2Therapy2Ongoing Early intervention ongoing boolean 0 1 3000 yes 3534

Encoding of values: 0 = no, 1 = yes

163 fu2 fu2Therapy2Duration Early intervention-Duration integer 0 24 999 3000 yes 3535

164 fu2 fu2Therapy3 Occupational therapy boolean 0 1 3000 yes 3536

Encoding of values: 0 = no, 1 = yes

165 fu2 fu2Therapy3Age Occupational therapy-age integer 0 36 999 3000 yes 3537

166 fu2 fu2Therapy3Ongoing Occupational therapy ongoing boolean 0 1 3000 yes 3538

Encoding of values: 0 = no, 1 = yes

167 fu2 fu2Therapy3Duration Occupational therapy-Duration integer 0 24 999 3000 yes 3539

168 fu2 fu2Therapy6 Child psychiatry therapy boolean 0 1 3000 yes 3540

Encoding of values: 0 = no, 1 = yes

169 fu2 fu2Therapy6Age Child psychiatry therapy-age integer 0 36 999 3000 yes 3541

170 fu2 fu2Therapy6Ongoing Child psychiatry therapy ongoing boolean 0 1 3000 yes 3542

Encoding of values: 0 = no, 1 = yes

171 fu2 fu2Therapy6Duration Child psychiatry therapy-Duration integer 0 24 999 3000 yes 3543

172 fu2 fu2Therapy7 Other therapy boolean 0 1 3000 yes 3544

Encoding of values: 0 = no, 1 = yes

173 fu2 fu2Therapy7Specific Specifics of other therapy text / text_field 3000 yes 3545

174 fu2 fu2Therapy7Age Other therapy-age integer 0 36 999 3000 yes 3546

175 fu2 fu2Therapy7Ongoing Other therapy ongoing boolean 0 1 3000 yes 3547

Encoding of values: 0 = no, 1 = yes

176 fu2 fu2Therapy7Duration Other therapy-Duration integer 0 24 999 3000 yes 3548

177 fu2 visual2 Visual problems ordinal / choice_radio 0 2 9 3000 yes 3549

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

178 fu2 fu2LangTest 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 hearing2 Hearing problems ordinal / choice_radio 0 2 9 3000 yes 3551

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

180 fu2 fu2Rehosp Rehospitalization ordinal / choice_radio 0 2 9 3000 yes 3552

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

181 fu2 fu2RehospSpecific Specifics to rehospitalization text / text_area 3000 yes 3553

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

Encoding of values: 0 = no, 1 = yes

183 fu2 fu2Vpshunt VP shunt boolean / choice_radio 0 1 9 3000 yes 3555

Encoding of values: 0 = no, 1 = yes

184 fu2 fu2Comment Comments text / text_area 3000 yes 3556

185 fu2 fu2Email E-mail of examiner text / text_field 3000 no

186 fu2 fu2DsLockdate date 0 0 3000 no

187 fu2 fu2NdiManual 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 fu2NdiComment Comment to neurodevelopmental impairment classification text / text_area unknown 3000 no

189 fu2 fu2RepeatSurgery Surgery for ROP boolean / choice_radio 0 1 9 2019 3000 no

Encoding of values: 0 = no, 1 = yes

190 fu2 fu2CatheterIntervention Catheter Intervention boolean / choice_radio 0 1 9 2019 3000 no

Encoding of values: 0 = no, 1 = yes

191 fu2 fu2TreatCardioName Name of Treating cardiologist text / text_field 2019 3000 yes 5580

192 fu2 fu2TreatCardioEmail E-mail of cardiologist text / text_field 2019 3000 yes 5585

193 fu2 fu2CardMedNone Cardiac Medication: None boolean 0 1 3000 yes 5589

Encoding of values: 0 = no, 1 = yes

194 fu2 fu2CardMedDiuretics Cardiac Medication: Diuretics boolean 0 1 3000 yes 5590

Encoding of values: 0 = no, 1 = yes

195 fu2 fu2CardMedSildenafil Cardiac Medication: Sildenafil boolean 0 1 3000 yes 5595

Encoding of values: 0 = no, 1 = yes

196 fu2 fu2CardMedAceInhibitor Cardiac Medication: ACE Inhibitor boolean 0 1 3000 yes 5600

Encoding of values: 0 = no, 1 = yes

197 fu2 fu2CardMedDigoxin Cardiac Medication: Digoxin boolean 0 1 3000 yes 5605

Encoding of values: 0 = no, 1 = yes

198 fu2 fu2CardMedBetaBlocker Cardiac Medication: Beta-Blocker boolean 0 1 3000 yes 5610

Encoding of values: 0 = no, 1 = yes

199 fu2 fu2CardMedOther Cardiac Medication: Other boolean 0 1 3000 yes 5615

Encoding of values: 0 = no, 1 = yes

200 fu2 fu2CardMedOtherSpecific Cardiac Medication: Specifics of other text / text_field 3000 yes 5625

201 fu2 fu2GiTubeFeeding Gastrointestinal tube feeding boolean / choice_radio 0 1 9 2019 3000 no

Encoding of values: 0 = no, 1 = yes

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