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Version of 14.12.2023. Last major change: Created

Nr.	Dataset	Item	Description	Type	Min	Max	Unknown	Start	End	Export	Export
1	patient	P_SNNID	SNN-ID (leave empty if new dataset!)	text / text_field				2000	3000	yes	10
		Standard SwissNeoNet ID number
2	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! 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
3	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.
4	patient	P_Year_of_birth	Year of birth	integer	2000	2030		2000	3000	yes	25
		Year in which child was born
5	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)
6	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
7	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
8	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)
9	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
10	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.
11	patient	P_GA_days	Days after weeks	integer	0	6		2000	3000	yes	65
		See gestational age in weeks (P_GA_weeks)
12	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)
13	patient	P_Number_of_infants	Number of infants in this birth	integer	1	6		2000	3000	yes	75
		includes stillborns and lifeborns
14	patient	P_Rank	Order of births	text / text_field				2000	3000	yes	80
		A=delivered first, B=delivered second, ....
15	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.
16	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

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