Imagine to be able to screen 70 000 samples for new biomarkers without having to collect the samples yourself or to be able to rescue a doomed late stage project with serious side effects, by screening a large, existing biobank to identify diagnostic tools to distinguish responders from non-responders. These are some of the possibilities that Swedish biobanks and registries offer, but how can you access them?
What are biobanks and registries?
A biobank can be described as a long-term storage of human samples that are identifiable to a specific person and linked to comprehensive personal data. According to Swedish law, biobanks are available for the healthcare system to facilitate and improve treatment and care, but also for research and education. Tissue and blood samples from all clinics in Sweden are routinely collected and stored for these purposes and a defined set of personal data is associated with them. Some of the largest collections aiming to gather information about specific indications are represented by KARMA with 70 000 sample focused on breast cancer, STHLM3 with 250 000 samples focused on prostate cancer and IMSE with 2700 samples focusing on multiple sclerosis research.
When it comes to the Swedish health care related registries, there are two main types; quality registries and health data registries. The quality registries are created and managed by health practitioners, as a means to facilitate their own work and improve care. They include information about the outcome of specific treatments. The health data registries are controlled by The National Board of Health and Welfare, and not by individual clinicians. These registries contain information routinely gathered within the health care system and are used to improve national healthcare and research . As an example, each year 50 000 new cases are registered in the Cancer Registry containing information about the type of tumor, treatment and diagnosis etc.
How can you access biobanks and registries?
Clearly, these are all valuable assets for healthcare, researchers, and universities in Sweden and in the long term for patients. But how can companies access and use these assets to speed up the development process of e.g. new drugs or diagnostic tools?
The unique information available in Swedish biobanks and registries are not an off the shelf commodity that can simply be traded, as they are complex, sophisticated collages of samples, quality registries and data. Fortunately, there is a strong ecosystem of researchers, clinics and facilities surrounding them, which greatly enhances the value of the actual sample collections. Through collaboration, companies can gain access to a combination of samples from a biobank, treatment history from a quality registry and patient history from a health data registry, in combination with knowledge and expertise from a researcher.
Companies are invited and encouraged to contact and collaborate directly with researchers and clinicians to access this knowhow. However, to make it easier to get an overview of the existing data and samples, and to facilitate the collaborations, certain organizations are working on offering infrastructures and access points. For example, the Swedish association of local authorities and regions (SKL) has a mission to coordinate the national quality registries, while BBMRI.se and KI Biobank are offering efficient infrastructures for biobanking:
BBRMI.se mission is to build a standardized and national biobanking structure for all of Sweden. They provide a comprehensive list of available biobanks. KI Biobank, a core facility at Karolinska Institutet, lists all biobanks and studies using their service. Both these registries are open and can therefore aid the company in their search for the right researcher and biobank. On Kvalitetsregister.se, the national quality registries are listed and described and it also provides information about how collaborations with the registries can be initiated.
Considerable investments are being made to develop platforms and infrastructures where academia, industry and healthcare interested in collaborations can meet, which will help to fully utilize the potentials of this valuable medical data.
Adrian Kling is a student in the Master’s Programme in Bioentrepreneurship at Karolinska Institutet. As part of an internship at Stockholm Science City Foundation, Adrian has been looking at Swedish biobanks and registers, how these currently play a central role in collaborations between academia, healthcare and industry and how this resource in the future might become even more utilized in research and healthcare.