Flemish Renal Registry

volledige verzameling van alle patiënten die behandeld worden met chronische nierfunctievervangende therapie ( dialyse of transplantatie )in het Vlaamse gewest en partim het Brussels Hoofdstedelijk Gewest, met doel tot epidemiologische monitoring en analyse, en tot actieve peer-review qua zorgkwaliteit door de behandelingscentra voor chronische nierinsufficiëntie

Data and Resources

Flemish Renal Registryjson Download

Physicians

Field	Value
Modified	2020-07-27
Release Date	2018-05-09
Identifier	66db7a24-581f-4908-98b0-1190ed0216f5
License	Creative Commons Attribution
Public Access Level	Public

Protocol

Protocol
Full title of the project	Flemish Renal Registry
Name or abbreviated title of the project where available	NBVN
Source type	Patient registries

Sponsor(s)

Primary organization that oversees implementation of study and is responsible for data analysis.
Name of organisation	Nederlandstalige Belgische Vereniging voor Nefrologie

Commissioner(s)

Organisation (1) that commissioned this project
Name of organisation (1)	Johan De Meester

Organisation (2) that commissioned this project
Name of organisation (2)	Bart De Moor

Governance

Governance
Is there a Steering / Accompanying committee?	Yes
Name of Steering/Accompanying Committee (1)	Commissie Registratie Nederlandstalige Belgische Vereniging voor Nefrologie
Composition of Steering/Accompanying Committee (1)	chosen nephrologists of the participating centers to treat chronic renal insufficiency

General information

General information
Project description	volledige verzameling van alle patiënten die behandeld worden met chronische nierfunctievervangende therapie ( dialyse of transplantatie )in het Vlaamse gewest en partim het Brussels Hoofdstedelijk Gewest, met doel tot epidemiologische monitoring en analyse, en tot actieve peer-review qua zorgkwaliteit door de behandelingscentra voor chronische nierinsufficiëntie

Therapeutic area
Disease	Male diseases of the urinary and reproductive systems Female diseases of the urinary and reproductive systems and pregancy complications

Objective of the project
Additional information	ad hoc projecten, in samenwerking met ORPADT en het College der Geneesheren voor het behandelingscentrum voor chronische nierinsufficiëntie

Scope
Scope	Epidemiology Quality of care research

Design of the project

Data transfer frequency
Data transfer frequency	Ad hoc (event based) Daily Weekly Monthly Quarterly Half-yearly 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	Unknown

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	Internal medicine Other medical specialisation

Informed consent

Informed consent
Are subjects informed?	Yes
How are subjects informed?	Yes
Do subjects have to give their consent?	Yes
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	Yes

Sectoral Committee Health / Social affairs (Privacy Commission)
Authorization by the sectorial committee Health / Social affairs of the Privacy Commission	Yes

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)	renal disease code - ERA-EDTA

Data quality

Data quality
First year for which data is available	1996
Procedures for checking and validating the source data	checks for missing items, cross-check double entry of records, on-site control if necessary
Data compilation process	validation of database after 6 à 8 weeks, 4 times a year
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	No information available
Participation rate of the health professionals	Very high (80-100%)
Extent of unit non-response	Very low or none (0-4%)
Extent of the item non-response	There is nearly no item non-response
Necessity of editing the raw data	There is nearly no item non-response
Extend to which the collected data are comparable across the Belgian regions	Comparability across the Belgian regions is restricted to some extend
Comparable or reconcilable over time	Comparability over time is restricted to some extent
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?	No
Additional information	No additional information available

Data storage

Data storage
Total number of unique records	30000
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)?	Yes
Additional information	No additional information available

Data access

Data access
Written Data sharing policy?	Yes

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