Research support combines broad approach with cutting-edge skills

“UCR is Sweden’s only cohesive clinical research organization that has two principals – Uppsala University and Region Uppsala.,” says Maria Eriksson Svensson, Centre Director at UCR and Professor at the Department of Medical Sciences, Uppsala University, proudly showing a photo with all 130 UCR employees gathered in one picture. ‘A good day,’ she adds with a smile.

National centre of excellence

UCR is Sweden’s leading clinical academic research organisation (ARO). It was established back in 2001 as a node between Region Uppsala and Uppsala University. Now a centre of excellence for clinical research and quality registries, it offers services to both academia and industry. Authorities, academic institutions and individual researchers, as well as companies in the pharmaceutical, diagnostic and medical technology sectors, receive help with everything from short-term scientific advice to full research support.

“Come all, serve all. It’s important that this message gets across,” says Maria.

She adds that one of their most important missions is to support clinical research at Uppsala University Hospital, and that their main task involves counselling researchers, investigators and research nurses within Uppsala University and Region Uppsala.

“We work continuously to increase awareness and accessibility. More people need to know about our organisation and the support that our infrastructure offers, not least all researchers at Uppsala University. We can help with most things. Most researchers benefit from connecting with us. As a large, established organisation with long experience, we save researchers both time and resources,” says Maria.

Free of charge meetings start the process

She also emphasises that the earlier in the process you make contact, the better the outcome. As an academic researcher, you are offered ten hours of free counselling. These free-of-cost meetings are a good way to start discussing the project. It doesn’t have to be a large study, nor do you have to be an established researcher with large grants to get help.

“It can be everything, or just a piece of the puzzle. We offer both breadth and specialisation, and we are available to everyone,” says Maria.

At a first meeting, you can find answers to simple questions, get help with contacts and discuss the need for support going forward. At a later meeting, UCR can offer reduced-price counselling and tailor its support to increase the chances of clinical success.

UCR wants to make it easy for researchers to get in touch. Maria emphasises that several contact routes are available. Most researchers come in via a Swedish or English contact form on the UCR website – the so-called ‘funnel’ – and part of their case management system. Two thirds of those who make contact have an Uppsala University email address. UCR has also tried to increase its visibility by organising and participating in theme days, including organising the conference ‘Aiming for the clinic’ together with SciLifeLab to reach out widely to researchers at the university. Grants Day and participation in various department days are other examples of how they try to increase the visibility of their activities and offers.

“We always say yes when a hospital or university department asks us to come and talk about our activities or provide specific advice,” says Maria.

Full-service provider of quality registers

The fact that UCR is well established as a full-service provider of quality registers is also an important part of the business. UCR creates and maintains a large number of quality registers and works with quality improvement in many different disease areas, including dementia and health of the elderly.

Maria mentions, among other things, the R-RCT concept used at UCR, which has resulted in important changes in international guidelines for disease treatment as well as financial savings.

“R-RCT stands for registry-based randomised controlled trials, and we are currently conducting about ten different studies within this framework. Most are in the cardiovascular field with the SWEDEHEART registry, which has been run very successfully over the years by Jonas Oldgren and Stefan James, both senior physicians and professors in cardiology at the Department of Medical Sciences,” says Maria.

UCR has long been very prominent and successful in cardiology but has also invested in broadening its activities to cover all disease areas, including dementia, neurology, metabolic diseases, and women’s and children’s health, to name a few. Jakob Hedberg is the new scientific leader in surgical oncology at UCR and has over the years conducted several studies where he has utilised UCR’s resources and team.

Experience counts

“Here you will find all the help you need as a researcher. Getting support from someone who has a lot of experience, has everything under control, and does things ‘by the book’ is very valuable for clinical researchers, who may not conduct studies so often and therefore cannot have the same insight as those who work with them on a daily basis. Here at UCR they really are professionals,” says Jakob Hedberg, associate professor and senior physician, whose research and clinical work focuses on helping patients affected by oesophageal and gastric cancer.

Jakob Hedberg works in many national and international networks in this field and hopes to contribute to more and deeper collaborations with UCR. As a surgeon, it can be a challenge to find enough time to balance research, networking and national care programme assignments. However, the needs of patients must always be the top priority, he emphasises.

“We meet to learn from each other and contribute knowledge and experience together, but it is important to try to ensure that clinically active doctors are involved in research, otherwise research questions will gradually be diluted leading to a risk that the current most important clinical issues will not be researched,” says Jakob.

Every patient an educational opportunity

Another growing area of expertise at UCR is orthopaedics. Nils Hailer is a professor and senior consultant in orthopaedics at Uppsala University Hospital and, together with colleagues in Uppsala and Umeå, he is running three large national studies in which 35 hospitals nationwide are collaborating in recruiting patients with hip fractures.

“Every year, around 20,000 people in Sweden suffer fractures of the femoral neck. Almost all are elderly and frail, and almost all need surgery to get back on their feet. Sweden has unique opportunities to conduct clinical research using quality registers. Drawing reliable conclusions requires a very large number of patients, but it is impossible for individual hospitals to recruit the required number over a reasonable time. That’s why we initiated these country-wide studies using a completely new approach,” says Nils Hailer.

It is also important to emphasise the patient as an important piece of the puzzle who can really develop healthcare. After all, the goal of all our work is better treatments now and in the future.

“All work at UCR is, of course, for the benefit of patients. High-quality healthcare is really in the interest of everyone, carers and patients alike, and every patient is an educational opportunity. They are also involved and contribute expertise to develop healthcare,” concludes Maria Eriksson Svensson.

Susanna Eriksson Dahlberg