National Kidney Disease Surveillance System (NKDSS) and Quality Assurance Programme (QA)
University of Limerick
2012
The overall purpose and objective of the data collection:
To provide a robust, trusted research data hub for the surveillance of chronic kidney disease (CKD) in Ireland, linking regional data sources from laboratory information systems (LIS), regional HIPE systems, the national ESKD registers, and CSO Vital Statistics. The NKDSS and QA Programme aims to improve the understanding of CKD by linking regional data and reviewing anonymised national data collections. The system is designed to enhance the quality of kidney disease data and ensure the integrity and accuracy of linked data.
In scope: Includes regional and national-level data on kidney disease, hospital discharges, laboratory test results, comorbid conditions, mortality data, and information from national registers like the ESKD register and CSO.
Out of scope: Data from private healthcare providers or non-participating regions is not included.
National – Captures data from regional systems, including laboratory information systems, regional and national HIPE systems, national ESKD registries, and the CSO Vital Statistics data.
General description of the national data collection.
The NKDSS is one of the largest linked longitudinal surveillance systems in Ireland. It captures both regional-level data from laboratory and regional HIPE systems and links this data to national datasets such as the ESKD registries and CSO Vital Statistics. The system provides detailed insights into chronic kidney disease (CKD) in Ireland by integrating data from various sources to support research and policymaking. It also reviews and analyses pseudonymised national data collections to enhance the understanding of CKD trends.
Researchers, healthcare professionals, policymakers, the Health Services Executive (HSE), the National Renal Office.
Demographic, clinical, administrative, and laboratory data including hospital discharges, biochemical test results, comorbid conditions, renal replacement therapies, and biochemistry data. The dataset includes linked national-level data from ESKD registers and CSO Vital Statistics, as well as regional-level data from laboratory and HIPE systems.
Is a data dictionary in place defining the data elements within this national data collection? If yes, please provide URL link to current data dictionary if it is available online.
Yes.
Are national-level identifier variables (for example, PPSN, IHI) included in this national data collection?
No unique identifier is currently available. The following identifiable data is captured to facilitate linkage.
Name, Address, Sex, Date of Birth, Date of Death, internal hospital number.
Are equity stratifies included within the dataset (for example, Place of residence, Race, Occupation, Gender, Religion, Education, Socioeconomic status, Social capital)? If yes, please include a list of these.
- Gender, age, and area of residence are included in Laboratory and hospitalisation datasets.
- Gender, age, area of residence Occupation, education are included in mortality dataset.
- Gender, age, ethnicity, are of residence are included in ESKD datasets.
Data is collected from regional laboratory information systems, regional HIPE systems, national ESKD registries, and CSO Vital Statistics data. This data is linked and anonymised for research and analysis purposes. The data is integrated periodically, and the system performs linkage across various data sources to generate insights into CKD in Ireland.
Frequency of data collection:
Monthly for laboratory, Bi-annual and annual data uploads for regional and national datasets, with annual reviews of anonymised national data.
What clinical coding/ disease classification scheme is in place (if any)?
ICD-9 was used from 2005 onward, and ICD-10 has been used from 2007 onward for clinical coding.
ICD-10-AM and Australian Classification of Health Interventions (ACHI) are used for coding diseases and interventions in the system.
Underlying Cause of Death will be classified according to International Classification of Diseases, Version 10 (ICD10).
What is the average number of records created in the national collection annually?
- Regional Laboratory systems 250K records
- HIPE National: ~1.7 million anonymised records in total. Approx ~225,0000 CKD related records
- HIPE Regional: ~120K records
- ESKD National: ~5K records
- Mortality: ~35K records
How often is data published?
Annualised estimates and insights into chronic kidney disease in Ireland are published on the NKDSS website (www.nkdss.ie).
Age standardised rates of chronic kidney disease related complications and outcomes.
How can data from the national collection be accessed? If available online, please provide URL link to data request form.
Data Requests can be accessed through online data request forms on info@nkdss.ie. Access to anonymised data for research purposes is available through approved applications.
Is data from the national collection available via Ireland’s Open Data Portal (https://data.gov.ie/)?
No
Further information, including documentation on the NKDSS Quality Assurance Programme, and access to research data, is available at www.nkdss.ie/faq.