Access data for precision medicine research

Researchers can access human data for research from various national and international sources, such as research databases, quality registries, patient or medical records, biobanks, and more. However, human data is often not openly available. Researchers seeking access to human data must submit an application outlining their project and its requirements. The responsible institution, typically a healthcare region or university, will release the data only after conducting harm and confidentiality assessments.

Swedish research projects and databases

It is possible to request existing data from several research projects or research databases in Sweden. Projects and research data can be found on the website of the entity responsible for the research, or in registries, data catalogs, and other compilations such as:

  • Precision Medicine Portal: This page highlights selected research projects tied to biobanks, showcasing their significant role in advancing scientific research and medical innovation. These projects address key scientific questions, drive technological development, and improve healthcare outcomes.
  • Swedish National Data Service (SND): In the research data catalogue at SND, it is possible to search for research projects and data from several disciplines. Some data and metadata can be downloaded directly from the catalogue. SND also provides information about data management and a service for data sharing.
  • Dataguiden.se: Dataguiden.se is the Swedish Research Council's research guide for registry and health data. It presents different data sources, outlines the research process (including laws and regulations), and offers support and guidance for data users.
  • Register Utiliser Tool (RUT): RUT is a web-based metadata tool developed by the Swedish Research Council to support register-based research. It allows researchers to search, explore, and compare metadata from Swedish public authority registers, a selection of quality registers and biobank sample collections. RUT helps identify relevant variables for research questions, facilitating more precise data requests and ethical review preparations. The tool does not contain individual-level data but provides structured metadata to guide researchers in evaluating the potential of available data sources.

Quality registries

The Swedish quality registries aim to improve the health care system by collecting individualised health data about, for example, certain diagnoses or problems (further information in Swedish). Data from a certain registry can be requested by researchers after approval by a steering group consisting of health care professionals and patient representatives.

Healthcare providers must inform patients before their medical information is collected in a quality register. This procedure differs from the inclusion of a research subject in a study, where written consent is required. However, personal data cannot be processed in a quality register or research study if the individual objects. If a person opposes the processing of their personal data after it has begun, the information should be erased from the register as soon as possible (further information in Swedish).

Every quality registry in Sweden is connected to one of six centres that provide support:

Patient records and data access

In Sweden, healthcare professionals routinely document patient interactions in electronic health records. These records may be accessed for medical research purposes, provided a confidentiality assessment is conducted and a formal data access request is submitted.

Sweden's healthcare system is decentralized: the 21 regions manage most hospital and outpatient care, municipalities are responsible for services such as home care, and private practitioners maintain their own patient records. As a result, researchers often need to coordinate with multiple data controllers to obtain comprehensive health data for nationwide studies.

Kliniska Studier Sverige provides guidance on how to navigate this process, including region-specific procedures, legal considerations, and contact points for submitting data requests.

Research data management

SciLifeLab provides general research data management (RDM) guidelines, available here, and specific information about the ethical, legal, and societal implications (ELSI) for research involving human data, available here. They also offer guidance on sharing sensitive human data.

More information and tailored research support can be found at universities, colleges, and healthcare regions or hospitals. A selection of links:

Last updated on 09-09-2025