National Genomics Platform

The new technologies for genetic analyses open new opportunities for precision medicine and personalised healthcare. The National Genomics Platform (NGP) is Genomic Medicine Sweden’s initiative to store, analyse and share genetic data in a secure and efficient manner. By leveraging advanced technology and coordinated national resources, we are paving the way for research and healthcare capable of meeting both current and future challenges.

A National Platform for Genetic Data

Precision medicine relies on the advanced analysis of health data, such as genetic information. With the rapid developments in genetic research, the need for a national platform for storing, processing and sharing genomic data has arisen.

As the cost of gene sequencing continues to decrease, enabling the sequencing of more patients and diagnoses than ever before, which in turn generates vast amounts of data. Today, this data is handled by fragmented systems, primarily located within university hospitals. Coordination of resources and advanced technology is crucial to facilitate research and development in precision medicine. By harmonising efforts, we can strengthen Sweden’s capacity to address pressing healthcare challenges, including rare diseases, cancer, and chronic conditions.

The National Genomics Platform was created to enable collection of data in a harmonised way, facilitate current research, and paving the way for healthcare of the future.

How the National Genomics Platform Works

The NGP has three main functions:

  1. To store and structure genomic and health data according to agreed standards
  2. To search and share data at national and international levels within research projects with ethical approval
  3. To analyse data in order to identify clinically relevant genetic variants

GMS has established Genomic Medicine Centres (GMCs) in all seven university hospital regions across Sweden. Within NGP, each region has a dedicated, protected storage area. Genomic data and metadata are securely transferred from local laboratory and storage systems via Sjunet or VPN to each region’s space within the NGP.

The different healthcare providers/regions do not have access to each other’s storage areas and access is restricted to authorised personnel only.

How Can the NGP Be Used Today?

Current regulations limit the possibilities of working with precision medicine within the NGP. A key component of precision medicine is the ability to compare health data from several patients across healthcare providers in order to treat an other patient. This is currently not allowed in Sweden. For this reason, data sharing within the NGP is currently used primarily for research purposes. To use data for research, a principal investigator must apply for ethical approval from the Swedish Ethical Review Authority. Once approved, the respective healthcare provider/region can decide to make the relevant data available to the researcher in NGP by giving the requested data a special tag. The special tag makes the data accessible in a shared area of the NGP accessible only to users within the approved project.

GMS anticipates that legislation will adapt to meet the needs of precision medicine, particularly the ability to share and compare health data. For example, the forthcoming European Health Data Space (EHDS) will enable secondary use of health data for patient care. In Sweden, a national inquiry into secondary use of health data has analysed and proposed expanded legal frameworks to re-use health data. By collecting and storing data in a harmonised way , within each region’s secure area, we are already preparing for the future of precision healthcare in Sweden.

Current legislation governs how NGP can be used today. There are strict rules about who can access patients’ health data and for what purposes these data may be processed. Today, patients’ data is collected and stored in each healthcare provider’s/region’s own storage area. The healthcare provider/region has administrator rights to its own storage area in NGP and can control who should have access to which data. The different healthcare providers/regions do not have access to each other’s storage areas. Each healthcare provider/region allocates authorisations to staff who will have access to their own storage area. Access to a patient’s health data is only permitted to those who have a care relationship with the patient or who have a work task to perform within the framework of healthcare. All access is logged, which allows the healthcare provider/region to follow up which staff have accessed which data.

Information film on the National Genomics Platform

In January and February 2025, open information sessions were held where the leadership of the NGP gave an overview of the infrastructure, its current status, and plans for the future.A recording of the presentation is available below.
Answers to questions submitted during the meetings will be published here shortly.