Image: Totojang
FEATURE What happens when thousands of blood samples and health data are collected in one place? ͯÑÕÊÓƵ has a unique research support function that helps researchers find answers to questions about diseases, lifestyle and health – with the help of biobanks and registers that span over decades.
The Section of Biobank and Registry Support (BRS) department is a faculty-wide research support function for researchers throughout the Faculty of Medicine with questions relating to biobank and registry studies, and is an important resource for Swedish and international medical research. It gathers expertise, infrastructure and unique cohorts to enable studies that can change our understanding of health and disease.
The section acts as a hub for researchers working with biobank and registry data. By coordinating withdrawals from multiple sample collections and registries, including the unique Northern Sweden Health and Disease Study (NSHDS), conditions are created for research at the highest level. Each year, around 80 withdrawal requests are processed, resulting in the withdrawal of around 20,000 samples for research and approximately 70 scientific publications annually.
With connections to both national and international networks – such as Biobank Sweden – the unit is a strategic resource for Umeå University and Region Västerbotten. BRS has both strong local roots and global reach, with the ambition of improving human health through science.
Today, around ten people work at BRS as case managers, scientific advisors, statisticians and administrators. The department is headed by Ulrika Morris and, since October 2024, has been organisationally placed at the Department of Public Health and Clinical Medicine.
Ulrika Morris, Head of The Section of Biobank and Registry Support
ImageHans Karlsson"The department has been built around NSHDS, which is the largest biobank cohort we administer, to enable the collection of samples and health data. Today, the unit has a broader remit and provides support in all matters relating to biobank and registry research at Umeå University, says Ulrika Morris," Head of the Section of Biobank and Registry Support.
In 1985, the Västerbotten Intervention Programme (VIP) was launched with the aim of detecting and preventing cardiovascular disease at an early stage, something that was extremely common in northern Sweden in the 1980s. In the same year, both Västerbotten and Norrbotten joined the national MONICA (Monitoring of Trends and Determinants of Cardiovascular Disease) study to map the development of cardiovascular disease, mortality and risk factors over time. From 1995 to 2006, the Mammography Screening Project (MSP) was carried out, in which researchers collected blood samples from women undergoing mammography in Västerbotten. These three sub-cohorts: VIP, MONICA and MSP, together form the NSHDS – one of Sweden's largest population-based cohorts with biobank samples.
We provide support in all matters relating to biobank and registry research.
Since 2023, Sweden has had a new Biobank law, which regulates how identifiable samples from humans may be collected, stored and used – with particular regard to individual privacy. According to this law, all blood samples must be stored in a registered biobank. The NSHDS samples are stored at Biobanken Norr, which handles all sample management, both collection and retrieval. BRS organises two expert groups that decide on retrieval from the NSHDS. The department then administers and coordinates the retrieval of registry data and samples, primarily from NSHDS, but also from a number of other registries and sample collections. However, researchers are also welcome to contact BRS for other types of biobank studies.
"Among other things, we provide support in matters relating to ethics, study design, personal data law and the drafting of necessary agreements. Researchers are welcome to contact us before submitting their applications to the ethics review authority. We read draft ethics applications to identify areas that need to be described in relation to personal data and sample handling," says Ulrika Morris.
Besides helping researchers with ethics applications, BRS helps researchers navigate other necessary agreements needed in biobank and registry studies.
"This can include biobank agreements, material transfer agreements (MTA), personal data processing agreements, and more, where we work based on established agreement templates," explains Ulrika Morris.
BRS works closely with Biobanken norr, which is part of Region Västerbotten, as well as university lawyers and data protection officers, all in order to help researchers move forward in the best possible way without compromising security.
Sophia Harlid, a researcher at the Department of Diagnostics and Intervention, has received assistance from BRS, including access to samples from NSHDS for a project in which researchers analysed stored plasma samples for a large number of different chemicals. She sees BRS as a source of collective knowledge, both in terms of sample handling and suitable study designs, but also in terms of navigating legal issues such as agreements and ethics applications. She emphasises the advantage of researchers seeking help from BRS, as they receive assistance both during the start-up and implementation of a project.
“One of the most difficult aspects of this type of research, in my opinion, is keeping track of the applicable regulations. In recent years, many new guidelines have been introduced, forms have been modified or replaced, and systems for applying for register data, for example, have changed. It is not easy for an individual researcher to keep track of everything,” explains Sophia Harlid.
If you are a researcher about to embark on biobank and registry research, you need to sort out your questions and contact BRS well in advance.
"Think carefully about the question or objective of your project, and how you think it can be answered using register data or samples from biobanks. Then it is a good idea to contact BRS early on, preferably when you are applying for funding and definitely before submitting an ethics application, for example. Don't hesitate to ask for help with cooperation agreements with other universities or similar," says Sophia Harlid.
Ulrika Morris also emphasises the importance of being prepared well in advance, as withdrawals from the biobank often take time. It is therefore important that researchers plan for this in their project plans. The BRS website has a clear flow chart that can help you understand the workflow. The biobank is constantly working to reduce queues, but researchers still need to be aware that the process can be time-consuming.
"Accessing biobank samples takes a long time. Accessing registry data is a little faster. That is why we also recommend contacting us as early as possible in your project, preferably before you submit your ethics application. Even at that stage, we can give you useful tips on what to include in your application to avoid having to submit ethics supplements," explains Ulrika Morris.
Do you have a research idea that involves biobank and registry research, or are you curious about how BRS can support you in your research project? Do not hesitate to contact BRS, either by emailing info.brs@ͯÑÕÊÓƵ or calling Ulrika Morris.
