Research infrastructure Biobank and database for children and young adults in Västerbotten.
NorthPop is a research infrastructure at Umeå University and Region Västerbotten.
Image Mattias PetterssonNorthPop is a research infrastructure under construction at Umeå University and Region Västerbotten that will cover 10,000 families in the years 2016-2032, each with a follow-up period of 8 years. The infrastructure consists of a database and a biobank with extensive, population-based, longitudinal data. The cohort will include 10,000 children and up to 20,000 young adults (the children's parents, who average around 32 years of age at inclusion).
Region Västerbotten and Umeå University have a successful tradition of research based on databases and biobanks, but previously they were almost entirely focused on middle-aged and older individuals, or specific diseases. There is a great need for of a population-based infrastructure with a biobank for children and young adults, as most of our lifestyle-related diseases and behaviors are established early in life. Children and young adults account for 50% of the population in Västerbotten (130 000 individuals). NorthPop therefore perfectly complements the Västerbotten Health Surveys (VHU), which cover the ages of 40 years and older. This will enable studies of the entire life course as well as studies spanning several generations.
NorthPop is an open research infrastructure available to all researchers at Umeå University and Region Västerbotten, as well as external researchers. More than 50 PhD researchers are already involved in NorthPop, at many different departments of Umeå University and clinics of Region Västerbotten. The number of projects and researchers using the infrastructure is expected to increase significantly, and the steering group will work to ensure that the collected material is used to its fullest for research.
We are convinced that NorthPop over the coming decades will develop into a highly valuable research resource at Umeå University and for all of Västerbotten county and contribute to world-leading cutting-edge research.
Pregnant women attending their routine ultrasound scan at Region Västerbotten’s clinics in Umeå, Skellefteå and Lycksele are invited to participate in NorthPop together with their partner and their child (current pregnancy). The children (and the whole family) are then followed until the child is 7 years old. The parents give informed consent, which also includes access to data from other local and national databases such as medical records system from hospital, dental, maternal and childcare services as well as national quality registers. The infrastructure covers the population in all of Västerbotten since 2021.
The data collection includes questionnaires and biological samples (Fig 1).
Questionnaires: We use an advanced web survey system that sends automated text messages (SMS) and e-mails to the participants with a link to the surveys. During pregnancy, four questionnaires are answered by the mother and four by the partner. A series of questionnaires are then sent out when the child is 4 months, 9 months, 18 months, 3 years and 7 years old. The questionnaire topics are extensive and cover all aspects of lifestyle, diet, physical activity, social activities, digital media use etc.
Biological samples include blood samples from the pregnant woman in gestational week 28. Blood samples are collected from over 90% of the women. Blood samples from the child are taken from the umbilical cord at birth and we get high quality samples from over 95% of the participants. Blood samples are also collected by a research study nurse at 18 months and 7 years of age. All blood samples are centrifuged and then the following aliquots are saved: 10 plasma tubes, 2 tubes of white blood cells (buffy coat) and 10 tubes of red blood cells (erythrocytes). Samples are stored at -80°C for later analysis including multi-omics and biomarkers for disease.
Other biological samples include a urine sample from the mother in pregnancy (gestational week 18) as well as saliva and fecal samples from the children at 1, 4, 9 and 18 months and at 3 and 7 years of age. In addition, a breast milk sample is collected from the mother when the child is 1 month of age.
Fig 1. Overview of the data collection in the NorthPop infrastructure
Data collection in real time
At the follow-up visit at 18 months of age, a small volume of plasma is analysed for Immunoglobulin E (IgE) antibodies against an inhalation mixture containing common airborne allergens, e.g. fur and pollen (Phadiatop) and a food mixture (fx5) with cow's milk, egg white, wheat, peanuts, soy and cod. If the child is sensitised to any allergen, the family is contacted by study staff and if the child also has symptoms, personal treatment advice is given by a NorthPop study doctor.
Around the age of 3, some children wear a biomonitor bracelet, 24 hours a day for a week, which collects continuous information about physical activity, sleep and light exposure.
At the follow-up visit at age 7, weight, height, blood pressure and hand grip strength are measured. Working memory and other executive functions are also measured using a simple computer game-like test. A skin prick test is done to assess whether the child is sensitised to common airborne allergens, e.g. fur, and pollen. A skin tape is applied for analysis of skin microbiota and immune markers.
Register data
We already have a large collection of register data for NorthPop participants from regional and national registers. Since we have ethical approval and individual informed consent, all this data is available with personal identifiers (personnummer) and added to our NorthPop database. We order additional data from these registers annually. So far, we have more than 2000 variables for each participant, with >99% coverage.
Progress of data collection
Since the start in May 2016, NorthPop has included over 25 000 individuals (over 8500 families, data from Apr 2024). The goal is to include 10,000 families, i.e. 30,000 individuals, and this is expected to be achieved in 2025.
The database contains at present over 10 million data points and the biobank contain over 300 000 aliquots of blood and around 30 000 other biological samples (data from Jan 2024). The amount of data in the database and the number of samples in the biobank will increase significantly over the next years.
The database is located physically on servers at ICT Services at Umeå University and is located organisationally under Register Center North, Region Västerbotten. The biobank containing NorthPop’s biological samples is stored in the Northern Sweden Biobank, Region Västerbotten.
Even though the NorthPop research infrastructure is still under construction,
over 30 research projects of very high quality are already underway, some of which have been published as scientific articles (as well as roughly 50 student theses (Jan 2024)).
More than 50 PhD researchers are already running many research projects based on the NorthPop infrastructure. The research questions focus on areas such as asthma/allergy, obesity, brain development, epigenetics, gut and oral microbiota, exposure to environmental toxins, lifestyle factors, socioeconomic factors, language development, mental health, chronobiology, nutrition and diet, and digital media.
The number of projects and researchers using the NorthPop infrastructure is expected to increase rapidly in the coming years, and NorthPop will be a "gold mine" for research at Umeå University, Region Västerbotten and for external researchers for decades to come.
Most of the affiliated researchers have used (or plan to use) NorthPop in applications for research funds, such as the Swedish Research Council, Forte, Formas, Knut and Alice Wallenberg Foundation, Central ALF, Erling Persson's foundation, Heart Lung Foundation etc.
Most of our common lifestyle-related diseases and behaviors are established early in life but it is not known exactly which environmental factors are risk factors for the different diseases and the mechanisms are not yet fully known. During the latest decades it has been more clearly shown that the fetus and the child’s early environment during pregnancy and the first two years of life (‘the first 1000 days’) are critical for the individual’s future health, far into adulthood. Exposure during this sensitive period, through for example diet, environmental toxins, drugs, medications, infections, physical activity and other lifestyle factors have been suggested to exert programming effects on metabolism, immunity and induce epigenetic effects via methylations of specific genes, an effect that can be preserved during cell division and remain for the rest of life. Moreover, early exposure can probably affect the development of organ systems, such as the brain, lungs and cardiovascular system, and these effects could also be permanent.
The fetus lives in an almost completely sterile environment but is colonised quickly after birth by bacteria on the skin, in the mouth and in the gastrointestinal tract. The gut microbiota’s makeup has recently been connected to important diseases such as allergic disease, obesity and autoimmune diseases.
There is therefore a great need for a research infrastructure that gathers unique data related to exposures during pregnancy and the early childhood. This concerns genetic and epigenetic data as well as data on the development of the gastrointestinal microbiota so that these factors can be related to later health outcomes. A preventative measure early in life results in a much bigger effect on the lifelong health than any measure taken later in life.
The NorthPop infrastructure will enable cutting-edge research into early markers of lifestyle-related diseases and how to prevent these diseases.
There is no similar research infrastructure in Umeå or Sweden that includes a sufficiently large, population-based database and biobank with extensive collection of biological samples from children and young adults. The fact that we also collect a variety of biological samples including blood, urine, feces, saliva, placenta and breast milk is also unique. Other distinctive strengths of the NorthPop infrastructure are real-time multi-sensor data, gastrointestinal microbiota and epigenetics, and access to individual regional and national registry data.
NorthPop, which covers ages 0 to 30+, complements Västerbotten's health surveys (VHU), which covers ages 40 and older, enabling studies of the entire life course and multigenerational research projects.
Young adults and children growing up today are exposed to completely different environmental factors than just 10 years ago. A more sedentary lifestyle with a lot of screen-time and frequent use of smartphones and the internet comes with new health hazards, but also completely new opportunities to gather information in cohort studies. The risks or benefits from growing up with smartphones/tablets from a young age are still to be described. This means that there is a great need for a research infrastructure that includes specifically children and young adults.
At the same time, the new information society also provides completely new possibilities to gather information. NorthPop was the first research infrastructure in Västerbotten to solely use web-based questionnaires for data collection – most of the participants answer these on their smartphone rather than on their computer.
The research infrastructure is led by Professor Magnus Domellöf and Professor Christina West in collaboration with a steering group consisting of researchers active at Umeå University and Region Västerbotten.
The current steering group for the NorthPop infrastructure are: Professor Magnus Domellöf (chair), Professor Christina West (vice chair), Docent Pernilla Lif Holgersson; Docent Sven-Arne Silfverdal, Docent Olof Sandström, Assistant Professor Marie-Therese Vinnars, Docent Sophia Harlid and Professor Patrik Rydén.
The steering group is responsible for building the NorthPop infrastructure and is currently also responsible for data extraction. When requests for data extraction have increased significantly, we plan to appoint an Expert Group that will take over the responsibility of handling applications for data extraction and access to biological material. If necessary, the steering group and the expert group can be further modified based on Region Västerbotten's and Umeå University's request regarding composition and organisation - it is important to ensure that the organisation is transparent, sustainable and future-proof.
Main contact: Magnus Domellöf, magnus.domellof@umu.se
Data manager: Richard Lundberg-Ulfsdotter, richard.lundberg-ulfsdotter@umu.se
Website: www.northpop.se
Region Västerbotten is the body in charge both for the biobank (organizationally located under Northern Sweden Biobank) and the database (organizationally located under Register Center North).
NorthPop is an open infrastructure available to all researchers at Umeå University and Region Västerbotten, as well as external researchers.
NorthPop arranges open workshops which researchers at Umeå University, Region Västerbotten, as well as external researchers, are welcome to attend.
The aim of these workshops is to inform potential users about the possibilities of the NorthPop infrastructure and create an arena for researchers to interact and generate new ideas for NorthPop-related projects. Researchers can also at any time contact the NorthPop steering group with project suggestions.
In 2023, standardised application forms were implemented to order NorthPop data for research. The steering group assesses received applications and routinely approves if the researchers have approval from the Ethical Review Authority. If an application concerns access to samples from the biobank, the steering group makes a further consideration and evaluates the proposed research against the limited availability of sample volume. Projects that aim to analyse a large number of samples and analyses that result in large data sets (e.g. omics) are prioritised. Datasets from analysed biological samples will be continuously added to the NorthPop database.
As the infrastructure is under construction, we have so far not introduced user fees - however, we encourage users to apply for funds for NorthPop-related projects. We also require that a proportion of NorthPop-related research grants goes to the infrastructure. NorthPop's research infrastructure is now transitioning from construction to maintenance phase and over the next few years we will instead implement user fees based on data extraction/delivery.
The NorthPop data manager assists researchers with data extraction. Data storage and data extraction are handled by ICT Services and Register Center North taking into account relevant legislation on protection of sensitive data, including the General Data Protection Regulation (GDPR). Users are normally given access to anonymised data, but some data delivery may include personal identifiable sensitive data if required by the aims of the project and if approval from the Ethical Review Authority exists.
Handling and extraction of samples from the biobank is done according to existing routines at the Northern Sweden Biobank.
Selection of PhD researchers who work on projects based on the NorthPop infrastructure, per department at Umeå University:
Clinical Sciences: Magnus Domellöf, Christina West, Sven-Arne Silfverdal, Olof Sandström, Anna Chmielewska, Ingrid Mogren, Maria Lindqvist, Eva Henje, Stina Bodén, Kotryna Simonyte Sjödin, Marie-Therese Vinnars, Anna Winberg, Karin Brunnegård
Odontology: Pernilla Lif Holgersson, Ingegerd Johansson, Pamela Hasslöf, Cynthia Huaynate
Social Medicine and Rehabilitation: Maria Wiklund, Jonas Sandlund, Daniel Jansson
Diagnostics and Intervention: Sophia Harlid
Molecular Biology: Katharina Wulff
Chemistry: Patrik Andersson, Johan Trygg
Psychology: Stefan Holmström, Eva Palmqvist, Erik Domellöf
Clinical Microbiology: Catharina Eriksson
Public Health and Clinical Medicine: Bo Glas, Andreas Tornevi, Anna Oudin, Ingvar Bergdahl, Gabriel Granåsen
Mathematical Statistics: Patrik Rydén
Food, Nutrition and Culinary Science: Elisabeth Stoltz Sjöström, Armando F J Perez Cueto Eulert
Umeå School of Business, Economics and Statistics: Xavier de Luna, Xijia Liu
Epidemiology and Global Health: Maria Nilsson
Language Studies: Maria Rosenberg
We also collaborate with external researchers, among others Åke Bergman and Anders Bignert at Örebro university, Per Kristiansson at Uppsala University as well as Bo Yuan at Norway’s University of science and technology.
