Newborn college Register

The register has three different databases:1. Nicaudit : 40 items regarding patients of less than 32 weeks and/or less than 1500 grams admitted at a Belgian NICU
2. Euroneonet : extra items for reporting to Euroneonet
3. NeoKiss : infectious diseases database for patients of less than 32 weeks and/or less than 1500 grams admitted at a Belgian NICU

Data and Resources

Newborn college Registerjson Download

Field	Value
Modified	2020-07-29
Release Date	2018-09-15
Identifier	95fe78b5-9499-4813-8e0a-c4a0729fbb6a
License	Creative Commons Attribution
Public Access Level	Public

Protocol

Protocol
Full title of the project	Newborn college Register
Name or abbreviated title of the project where available	NCR
Source type	Patient registries

Sponsor(s)

Primary organization that oversees implementation of study and is responsible for data analysis.
Name of organisation	Federal Public Service Health, Food Chain Safety and Environment [College van geneesheren voor de moeder en de pasgeborene]

Commissioner(s)

Organisation that commissioned this project
Name of organisation	Gunnar Naulaers

Source(s) of Monetary or Material Support

Additional information	Database is been managed by Neonid asbl

Governance

Governance
Is there a Steering / Accompanying committee?	Yes
Name of Steering/Accompanying Committee (1)	Newborn College
Composition of Steering/Accompanying Committee (1)	members of the Newborn College (College moeder-pasgeborene sectie pasgeborene)

General information

General information
Project description	The register has three different databases:1. Nicaudit : 40 items regarding patients of less than 32 weeks and/or less than 1500 grams admitted at a Belgian NICU 2. Euroneonet : extra items for reporting to Euroneonet 3. NeoKiss : infectious diseases database for patients of less than 32 weeks and/or less than 1500 grams admitted at a Belgian NICU

Therapeutic area
Disease	Female diseases of the urinary and reproductive systems and pregancy complications Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Objective of the project
Additional information	No additional information available

Scope
Scope	Epidemiology Quality of care research

Design of the project

Data transfer frequency
Data transfer frequency	Yearly

Method of data transfer
Data transfer method(s)	Web application (eg. online registration form, upload)

Sites involved in the project

Type of site(s)
Care Provider	General hospitals

Health professionals involved (encoding) in the project

Health professionals involved (encoding) in the project
Care Giver	Physicians
Specialty of physicians involved (encoding) in the project	Paediatrics

Informed consent

Informed consent
Are subjects informed?	No
How are subjects informed?	Not applicable
Do subjects have to give their consent?	No
How do subjects give their consent?	Not applicable
Is there a procedure to provide subjects the ability to consult their registered information?	No
Is there a procedure to provide subjects the ability to correct their registered information?	No
Additional information	No additional information available

Review

Ethics Committee
Authorization by an Ethics Committee?	No

Sectoral Committee National Registry (Privacy Commission)
Authorization by the sectorial committee Health / Social affairs of the Privacy Commission	No information available

Sectoral Committee Health / Social affairs (Privacy Commission)
Authorization by the sectorial committee Health / Social affairs of the Privacy Commission	No information available

Sectoral Committee Crossroads Bank of Enterprises (Privacy Commission)
Authorization by the sectorial committee Crossroads Bank of Enterprises of the Privacy Commission (Y/N)	No

Data dictionary

Classifications and Terminology
Name	Other
Other classification system(s)	definities neonatologie

Data quality

Data quality
First year for which data is available	2002
Procedures for checking and validating the source data	Check for missing records by IT Check for filling in the data by each hospital
Data compilation process	data editing
Punctuality for the most recent completed data collection: the data collection was completed	Less then 6 months (but more than 1 month) after the communicated deadline
Participation rate of the health institutions	Very high (80-100%)
Participation rate of the health professionals	Very high (80-100%)
Extent of unit non-response	Low (5-9%)
Extent of the item non-response	There is little item non-response (<5%)
Necessity of editing the raw data	The rate of item non-response is not known or unacceptably high (>50%)
Extend to which the collected data are comparable across the Belgian regions	There are no restrictions concerning the comparability across the Belgian regions
Comparable or reconcilable over time	There are no restrictions concerning comparability over time
Additional information	No additional information available
Extent of problems with the misclassification of statistical units for their key variables	Very low or none (0-4%)
Can records belonging to same entity be matched?	Yes, no restriction in time
Additional information	No additional information available

Data storage

Data storage
Total number of unique records	43056
The organisation in charge of storage of the collected data, is certified as being compliant with the international standards on information security management system (eg. ISO27001)?	No information available
Additional information	No additional information available

Data access

Data access
Written Data sharing policy?	Yes

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