Quick start for newcomers
Before contacting biobanks and registers
There are some general rules that are good to know before contacting biobanks and registers, and establishing the study plan.
Most countries have strategic agendas about how to provide better access to their valuable research infrastructures, like biobanks and registers. Usually there is one national entry point, or umbrella organization in a country, who provides information on the local resources, and helps to find suitable collaboration partners. It is good also to be aware that terminology might vary between countries. For example, in Sweden you might meet the term “quality registers” and in other countries national or regional “health registers”. The Estonian biobank has the right to provide access to samples, where-as in Sweden the Biobank Sverige, is the so called “roof organization” for biobanks. In order to obtain permission for access, the biobanks custodian should be contacted. There are all together more than 450 biobanks in Sweden.
Umbrella organizations in different countries
|Country||Health data registers||Biobanks|
|Estonia||The Estonia Ministry of Social Affairs (https://www.sm.ee/en) and National Institute for Health Development (https://tai.ee/en/r-and-d/registers)|
The Estonian Health Insurance Fund
|Estonian National Biobank, University of Tartu (www.biobank.ee). Have been linked with 9 health registers. Can be linked with 1500 national registers.|
|Denmark||Danish Clinical Registries (RKKP) https://www.rkkp.dk/in-english/||The Danish Biobank|
(www.danishnationalbiobank.com/register.html), incl. 12 biobanks. Can be linked with 3 national registers.
|Sweden||https://www.registerforskning.se/en/ (Operated by Swedish research Council)|
kvalitetsregister.se (operated by Swedish Regions and Municipalities, main Swedish page)
Swedish Quality Registers (operated by Swedish Regions and Municipalities, English pages)
|Biobank Sweden (www.biobanksverige.se), includes 250 sample collections. Can be linked with many mandatory registers (https://www.registerforskning.se/en_us/)|
As external partners have a limited participation option in EIT Health proposals (max 50 000 EUR/Y/partner), we have collected together information about biobanks that belong to EIT Health partners and who are open to share the data for EIT Health developments in the frame of EIT Health Innovation proposals.
If partners are seeking health data for cost-benefit analysis (that is pre-requisite if new product or service will be reimbursed by healthcare payer in particular country), we recommend to also collaborate with health economists of that particular country, as the registers are mostly in local languages and the local experts know better how to navigate quickly through the process.
In some biobanks the samples are already analysed and it is possible to get access to the omics analysis data (genome data, NMR data, clinical biochemistry results etc). In which case it is faster and more cost effective to start your R&D project. If the biobank cannot provide previously produced data and you need to start from biological samples. We recommend to involve core-facilities to obtain data from the samples. If you do not have data analysis expertise in your team, engage EIT Health community universities to use their expertise on biostatistics, bioinformatics, etc. Also, some biobanks have strong science teams to provide their expertise for new R&D activities in the frame of the collaboration projects. Some biobanks have even already developed algorithms for disease risk prediction.
- Please find the relevant contact persons here.
When you access data from registers, it is usually not personalised (cost-benefit analysis and market size analysis do not require personalised data) which makes it complicated to combine data and sample data together. In order to combine health registers’ data and sample data, it should be linked via a personal code in a secured way to protect participants’ rights. For this reason, some biobanks, where legally possible, are linked directly to the national health registers, to combine the health data and omics data together, in order to empower the studies, and have combined health and omics data at an individual level, but still anonymous. It provides a quick overview of the disease and treatment history of sample donors, which can be used for example for discovering new biomarkers for particular diseases.
In general, to obtain access to biobank samples and data, or registers data, it is required to first obtain ethical approval, which might take several months. Often a collaboration with a partner in the country in question is also required to gain access to samples and/or data. In different countries there are slight differences in processes, as outlined here.
In the majority of cases, access is not free of charge as there are direct costs for the biobank or register. In order to agree the cost, a detailed study plan providing a clear overview of required samples and data sets is a prerequisite.
The "Registers and Biobanks in Transition” strategic initiative is funded by EIT Health