Uppsala Biobank – a helping hand

Anna explains that when she was hired in 2008 to build up the activities in Uppsala, she came across 138 different biobanks.

“There was no real structure and no systematic way of organising them, just a lot of sample collections that were reported as biobanks”, says Anna, smiling at the memory.

Before joining Uppsala Biobank, she worked for several years at Karolinska Institute Biobank, where she learnt both what to do and what not to do, she adds. It then took four years to get the 138 biobanks ordered and reorganised into a single one. Since then, she and her co-workers have managed to build up a fantastic operation, and today she is the proud Uppsala Biobank Manager.

“So, I would say that we have gone from being one of the worst to – according to some – one of the best,” says Anna.

Around 15 million samples

Today, Uppsala Biobank holds an estimated 15 million samples, including about five million samples from blood, urine, faeces, spinal fluids, etc. and about ten million tissue samples. A real goldmine for research and development in other words. The biobank handles samples from virtually all diagnostic areas and sends them to many types of analysis platforms. Some are also analysed in its own analysis lab, Uppsala Biolab. The study that has collected the most samples in recent years is U-CAN, an infrastructure for collecting data and creating a biobank of blood and tumour samples for cancer research, with around one million tubes and around 17,000 sample donors.

Psychiatry a fast-growing area of biobanking

Another fast-growing area of biobanking is psychiatry. Janet Cunningham is Professor of Psychiatry at the Department of Medical Sciences at Uppsala University and has been collecting samples and building a growing biobank since 2012.
Within Uppsala Biobank, there is Uppsala Psychiatric Samples Collection (UPP). UPP is an infrastructure for the collection of biological samples for research in psychiatry and child and adolescent psychiatry, such as blood and saliva.

“Good infrastructure, sample management and documentation enable us to obtain valuable data and new knowledge, and this gives us completely new opportunities, such as a better understanding of underlying immunological and other biological factors that contribute longitudinally to psychiatric vulnerability”, explains Janet Cunningham.

She notes that inclusion of participants has long been a major problem in psychiatric research contexts. Therefore, a key success factor has been to increase inclusion in studies and get more patients to provide samples.

“It must be easy to participate, and the questions asked must be relevant for the patient. It’s also important when you ask. If the individual is not feeling well, it can feel tough to participate if it means making an extra visit or having to concentrate for longer periods to answer extensive questionnaires”, says Janet, referring to one of the group’s publications on patients’ reasons for abstaining: ‘sick and tired’.

Today, Uppsala Psychiatric Patient samples (UPP) has a high participation rate, thanks to the fact that over time its staff have learnt how patients want to be invited to participate and be treated. That they feel well informed, that they can say no, and that research participation does not become a burden requiring extra effort and high functioning. With systematic biobank work, Janet is convinced that she and her colleagues will get a better overall perspective and at the same time nuance the picture of psychiatric illness.

“I am so happy and grateful today that I met Anna and learnt about Uppsala Biobank when it was newly established. This infrastructure has contributed to the fact that we now have a large database of patients in the sample collection. This is unique and it gives us real power”, says Janet.

Legal and regulatory help

Many researchers have told Anna Beskow that they can sleep well at night now that they have help in dealing with the legal aspects of biobanking. The hope is that researchers will get in touch as early as possible so that we can help them get it right from the start and maximise the use of their samples. But it’s never too late either, says Anna.

“I think it is important to understand that we are not police officers. We are here to support. Our job is to solve problems and find ways forward – how do we do this in the best way. That is central to us.”

Home sampling on the increase

In addition to keeping abreast of new rules and regulations, it is also important to keep up with the types of samples that are relevant to researchers. Recently, interest in home sampling has increased and today five different studies are planning to start biobanking samples collected on filter paper (dried blood spots) in the participants’ homes.

“Although collection on filter paper has been done before, for example in PKU screening, we are the first among biobanks in Sweden to build an infrastructure around ‘filter paper biobanking’ for research. There are some logistical challenges both in terms of handling information and samples. For example, one of the studies is planning to collect so many samples that we will have difficulty finding space in our existing premises, but we usually find solutions to most problems” says Anna, smiling.

What Anna would like is for researchers to identify and use more samples of interest in research. A lot of work is currently being done to make samples available in a more structured and searchable manner to display which are available and which can be picked out at national level.

Challenges and future perspectives

“Naturally there are challenges. Different tube formats, different IT systems and not the exact same sample donor information, for example, all of which makes it difficult to pick out samples, but we will probably solve this in the long term because we really want to see the samples get a broader use”, says Anna.

Since 2014, Uppsala Biobank has also housed an analysis lab, Uppsala Biolab, an accredited research lab available to all researchers. They want more researchers to know that the lab exists and that they can use it.

“It’s a fantastic opportunity and it’s therefore important that we reach out with our offer, and we can definitely be a little better at that”, says Anna. She also mentions that they have planned activities for the future where they will get out and about among researchers.

At Uppsala Biobank, no days are the same, says Anna, and that’s what makes the job so appealing. She is proud of the organisation and her team and what they have achieved together.

“For example, thanks to the healthcare-integrated biobanking we have built up, we have enabled more research than before, and we were extremely quick during the pandemic to start collecting and analysing samples for research in Uppsala when the rest of the world was having difficulties. I think that’s very impressive”, Anna concludes.

Susanna Eriksson Dahlberg