14 October 2016

What registry data is available and how can it be used?

The primary purpose of the quality registries is to compile data in order to improve the quality of healthcare. The care providers can use their own registry data to monitor quality and perform continuous quality-improvement initiatives, and this should not be considered research.

Personal data collected for the quality registries may in certain circumstances also be used for research purposes. In order to use the quality registry for research, it is important that it is stated in the information provided to the individual when the data is registered in the quality registry that the information may be used for research purposes.

Any National Quality Registry that intends to use data from the registry for research must therefore ensure that the patient information is formulated in such a way that it is clear to the individual care recipient that registry data may be disclosed for use in research following a special review by the Ethics Review Board.

Joint processing of data

Because the majority of quality registries, like population registries and health data registries, are based on personal identity numbers, it is possible to jointly process data for research purposes if legal and ethical research requirements are met. A request for disclosure must be submitted to all registry-keeping authorities, which each perform their own confidentiality reviews and decide on disclosure.

The National Board of Health and Welfare has a National Registry Service. The Registry Service has been tasked with assisting in the joint processing of data for research purposes, such as between quality registries and the National Board of Health’s health data registries.

The National Registry Service can also assist in joint processing with registries at Statistics Sweden and the Swedish Social Insurance Agency. Quality registries can also have coverage analyses performed by matching with the health registries at the National Board of Health and Welfare, they can be supplied with data from the Cause of Death Registry and receive statistical and epidemiological methodology support.

Practical information

The National Board of Health and Welfare website offers a step-by-step guide for registry research, a description of how registry data is matched between different authorities, and a description of the registries under the National Board of Health and Welfare.

The National Board of Health and Welfare

The Board also compiles a list of the National Quality Registries and their variables:

The National Quality Registries (in Swedish)

Information about The National Registry Service (in Swedish)

For details on ordering individual data from the Board, and information on health data registries and how registries are matched, please see:

Statistics Sweden (SCB)

Contact Statistics Service for information on what registries are kept at Statistics Sweden (SCB) and how researchers can access them:

Contact Statistics Service

Guidance for researchers and universities

For information on data for Analysing health Insurance and labour market studies:

Longitudinal integration database for health insurance and labour market studies

All national registry centres and regional cancer centres can also be contacted for questions regarding research on national quality registries. Statistical and epidemiological support is also available there.

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