Good examples

SCAPIS – a unique knowledge base for researchers today and in the future

Göran Bergström, huvudledare för SCAPIS

SCAPIS is the largest population study in Sweden within the cardiovascular and pulmonary system area. It is a world unique project that includes 30,000 patients and involves all six healthcare regions, university hospitals and a number of scientific players. The vision is to be able to individualize risk assessments as well as to prevent and postpone cardiovascular and pulmonary diseases in patients.

SCAPIS, Swedish CArdioPulmonary bioImage Study, is a population study around cardiovascular, epidemic and genetic research, initiated by Swedish researchers in 2007.

A pilot study was conducted in 2012 to ensure that the population study was possible to implement, and in 2014, the major SCAPIS study was initiated.

Göran Bergström, professor in cardiovascular research at the Sahlgrenska Academy in Gothenburg, started working on the project in 2008 and is currently the head of the study.

– I am responsible for coordinating the study and chairing a steering committee with representatives from six universities in Gothenburg, Lund, Linköping, Stockholm, Uppsala and Umeå. The clinical research is conducted at the respective university's university hospital, which means that twelve organizations cooperate to better predict, prevent and treat diseases such as myocardial infarction, stroke and the lung disease COPD.

Blood samples as prognostic markers

In addition to being a professor in cardiovascular research at the Sahlgrenska Academy in Gothenburg, Göran Bergström is also a clinical physiologist and works with ultrasound diagnostics at the Sahlgrenska University Hospital one day a week.

– It is important to me to have one foot in the clinic and the opportunity to meet patients regularly. It is also an advantage and a prerequisite for managing the SCAPIS study.

It is an ambitious and comprehensive study that includes a total of 30,000 patients; 5,000 from every university hospital in the ages of 50-64 years. With the help of the population registry, people in the right age groups living in certain areas have been randomly selected to participate in the study.

A main purpose is to find effective methods that enable early detection of changes and signs of diseases of the heart, vessels and lungs, and in good time to provide correct and individualized treatment. Participants are asked to complete a comprehensive questionnaire and provide blood tests, as well as undergo ultrasound examinations, pulmonary function tests and computer tomography with an advanced CT camera.

– We want to find out why diseases such as myocardial infarction, stroke and COPD occur. The participants included in the study are relatively healthy individuals, but a few have already been affected by these diseases and the vast majority have a risk factor. A strength in our study is the combination of data-, blood- and image information that allows us to study in detail risk factors such as blood fats and cholesterol. For example, when we look at the heart's blood vessels with computer tomography, we see that just under half of the study population have changes in their coronary vessels, which may be a precursor to diseases such as vasospasm and myocardial infarction, says Göran Bergström.

Likewise, CT-examinations of lungs can provide information on those who run the risk of developing COPD, chronic obstructive pulmonary disease. Much suggests that impaired lung function is a risk factor for atherosclerosis.

The study is expected to last for several decades, until at least 2040. Thanks to extensive data collection, you can request registry extracts to find out which individuals have fallen ill and compare how their risk factors appeared when included in the study.

– A clear vision is that in the future we could take a simple blood sample from all individuals between 40-50 years and, on the basis of biomarkers, be able to determine who is at increased risk of cardiovascular disease. Cardiovascular disease can not be eradicated because it is likely to be part of the aging process. But we could shift the disease maybe ten years ahead if we get a more targeted and more refined diagnosis, thanks to better blood and image markers.

Challenges and lessons learned

It takes time to recruit 30,000 participants, but thanks to national cooperation, it has been relatively fast, says Göran Bergström. In February 2018, 28,000 individuals were included.

The study encompasses a breathtaking amount of information about each individual.

– We are now working on a data structure service developed by the University of Gothenburg in close collaboration with Uppsala Clinical Research Center. The data-, image- and biobank that is being built within the framework of SCAPIS is a national resource and will serve as a knowledge base for Swedish researchers for many decades to come.

– Later on, the knowledge bank will be available also for researchers from other countries than Sweden.

But is a Swedish population interesting, for example, for a Japanese researcher?

– Although the population groups differ, the mechanisms for the disease are in many cases the same. Then it can be different in terms of genetics and risk factors. But by conquering new knowledge and then comparing it to other populations, we can learn more about the meaning of the lifestyle, for example.

What are the main factors for successfully running such a large study, which requires collaboration between many organizations and actors?

– Those who work in the project all have a common idea that we are stronger together. Another success factor is that in addition to the main national investigations, each region has an opportunity to take local initiatives and make own projects based on their own interests. In Gothenburg and Uppsala, for instance, there is interest in the area of sleep apnea and they do specific measurements regarding that, in Malmö they are conducting 24-hour blood pressure measurements. All sites have their own projects that they can connect to those made within the framework of SCAPIS.

– Another advantage is the financial support we have received, which enabled us to be independent and able to choose partners ourselves. Running such a large project on a purely academic basis is unique.

What lessons did you learn?

– We learned a lot from the process that led up to the start of SCAPIS, among other things the importance of always starting with a pilot study, but also about an early and broad anchoring, transparency and the importance of good chemistry and respect for one another. It is also important to consider main structural issues such as how to get the work flow going, how to best recruit patients, how to manage experiments logistically and what routines to use when important clinical findings are found and investigated.

What have been the major challenges?

– We are twelve organizations with different cultures and interests that have to agree and move in the same direction, it is an exciting challenge. And it is clear that we have had to conquer a series of obstacles along the way. But I'm still surprised by the strong driving force and determination that exist and that actually means we managed to move together.

What has come out of the project so far?

– When we started there was no coordination of biobanks for example, and there were no functioning biobank organizations in any of the locations. After SCAPIS has started, we have developed a common standard for collecting and handling samples based on different quality standards. As I see it, SCAPIS has contributed to and accelerated the important development of Biobank Sweden, a national biobank infrastructure based on close collaboration between universities, county councils / regions and industry.

– With joint efforts we have also established structures for sending images and data, and for dealing with issues such as ethics and personal data handling. These are important key factors.

– The pilot study carried out in 2012 has also generated about 20 publications, covering 1100 people. I expect several publications from the main study already next year.

What do you think is the most stimulating thing about leading this project?

– We are close to succeeding with what many thought was impossible, and it feels fantastic. Thinking of the amount of data and knowledge that is generated gives me goose bumps. We have every opportunity to implement really good studies in Sweden. SCAPIS has and will have enormous importance for clinical research, not only in Sweden but also globally.

– It is also stimulating to be able to highlight the epidemiological research that has been neglected for a long time.