Overview of Health Data Registries in The Netherlands
Umbrella organisations
Main players in the Dutch health registry landscape are:
- Health-RI is building a national research data (see biobanks in The Netherlands section) infrastructure combining all relevant stakeholders on one platform. Through their tools and services Health-RI provides access to several entry points for finding and acquiring samples and health data.
- The Dutch Institute for Clinical Auditing (in Dutch) is a payer-funded, not-for- profit organisation in the Netherlands that facilitates the development and maintenance of national outcomes registries around medical conditions. Currently it manages 22 quality registers.
- National Health Care Institute (Zorginstituut Nederland), is an advisory and implementing organisation for the Dutch Health Insurance Act (Zorgverzekeringswet, Zvw) and the Long-term Care Act (Wet Langdurige Zorg, Wlz). All activities undertaken by the National Health Care Institute focus on making sure that everyone in the Netherlands receives good care.
- In 2019, the National Health Care Institute, initiated a project called Control of Registers for expensive medicines (Regie op Registers voor dure geneesmiddelen, in Dutch), on behalf of the Dutch Ministry of Health, Welfare and Sport. Part of this project is developing and implementing a standardized method for quality and patient registries for expensive medicines. The results of this project could spill towards all Dutch health care registries in the future.
- Nictiz is the national competence centre for electronic exchange of health and care information. In 2016, Nictiz collaborated with the National Health Care Institute and several other organisations, to identify the patient registers available in the Netherlands. The results can be downloaded here.
- Nivel is the Netherlands Institute for Health Services Research. In 2012, Nivel; together with the National Institute for Public Health and the Environment (RIVM) and Mondriaan, Data Archiving and Network Services (DANS); performed the study “Inventory Patient Registries in the Netherlands”. The study provides an overview of available registries, access to existing registries, gaps in the availability (and access to) registries and the organisation of (new) registries. The report, in English, can be found here.
Overview of Dutch health registries
Finding Dutch health registries
- Zorggegevens is a metadatabase that provides an overview of care registers, patient registers, surveys, monitors, long-term (cohort) studies and other studies whose data are available for reuse. It contains most active and closed health-related registries and is maintained by the Public Institute for Health and the Environment (RIVM). The metadata presented in Zorggegevens is part of the larger NARCIS database (National Academic Research and Collaborations Information System) that provides access to scientific information, including (open access) publications from the repositories of all the Dutch universities, KNAW, NWO and a number of research institutes, datasets from some data archives as well as descriptions of research projects, researchers and research institutes.
- The Dutch Institute for Clinical Auditing (in Dutch) manages several quality registers.
- PHARMO, an independent Dutch research organisation, maintains a large database network that provides information of more than 4 million (25%) residents of a well-defined population in the Netherlands for an average of ten years. The data PHARMO uses is managed by the independent foundation Stizon, as trusted third party.
- All Dutch cardiovascular disease stakeholders (researchers, clinicians, funders, patients etc.) collaborate in the Dutch Cardiovascular Alliance. One of the focus pillars of the DCV Alliance is the reuse of data and data infrastructure. The DCV Alliance also hosts a Catalogue on Cardiovascular Cohorts, a searchable database providing an overview of most data and/or sample (research)collections, studies and biobanks that are being preserved in the cardiovascular field in the Netherlands. The catalogue displays basic information (e.g. sex, age and type of disease) about the cohorts with the objective of helping researchers to quickly identify data and/or samples that could be included in their research. Furthermore, the contact details for each cohort are available so researchers can request data and/or materials directly from them.
Examples of Dutch health registries
- Netherlands Cancer Registry (NCR) is managed by the Netherlands Comprehensive Cancer Organisation. The Netherlands Cancer Registry provides insight in the incidence and prevalence of cancer, which patients, which treatments, and prognosis of cancer is important to improve care for cancer patients. The Netherlands Cancer Registry is the only oncological hospital registry in the Netherlands with data on all cancer patients. Data are available on national level from 1989 onwards.
- The Netherlands Twin Register, managed by the Vrije Universiteit Amsterdam.
- The Netherlands Institute for Health Services Research (NIVEL) manages the Nivel Primary Care Database using routinely recorded data from health care providers to monitor health and utilisation of health services in a representative sample of the Dutch population.
- The Dutch Foundation for Pharmaceutical Statistics (SFK) collects exhaustive data about the use of pharmaceuticals in the Netherlands since 1990. The SFK directly gathers its data from more than 97% of the community pharmacies in the Netherlands.
- Dutch Health Data manages several care-related data streams, including the National Registration of Hospital Care (landelijke basisadministratie ziekenhuiszorg, LBZ). All Dutch hospitals provide data for the LBZ, which is used to provide information regarding patient care, quality, operations, and finances. Researchers can also request the data for research purposes (in Dutch).
- The national statistical office, Statistics Netherlands (CBS), provides reliable statistical information and data to produce insight into social issues, including on the theme Health and Welfare. Authorised institutions can conduct their own research using microdata sets of Statistics Netherlands (CBS). Microdata are linkable data at the level of individuals, companies and addresses, which can be made available to researchers under strict conditions for statistical research. The complete results of your research must be made directly available to interested parties, as a rule at no charge.