NorthPop is a research infrastructure at Umeå University and Region Västerbotten under construction. It consists of a database and biobank containing extensive population-based, longitudinal data which are collected from 10 000 families or in total 30 000 children and young adults (the children’s parents, who are 30 years of age on average).
Region Västerbotten and Umeå University have a successful tradition of research based on databases and biobanks, but existing infrastructures have previously almost entirely focused on middle-aged and older individuals, or specific diseases. There has previously been a complete lack of a population-based infrastructure with a biobank for children and young adults. There is however a great need for a database and biobank covering this young population as the majority 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, which predominantly covers the ages 0 to 30 years, therefore complements perfectly the Västerbotten Health Surveys (VHU), which cover the ages of 40 years and older, enabling completely new multi-generational research projects.
NorthPop is an open research infrastructure available to all researchers at Region Västerbotten and Umeå University, and also external researchers. Currently more than 30 PhD researchers are involved in the NorthPop project, at many different clinics of Region Västerbotten and departments of Umeå University. The researchers are already running over a dozen ambitious research projects based on the NorthPop infrastructure with questions on asthma/allergy, obesity, brain development, epigenetics, gut microbiota, environmental toxins, lifestyle/socioeconomics, mental health and digital media to name a few areas. The number of projects and researchers using the NorthPop infrastructure is expected to increase significantly over the coming years and the steering committee will work to ensure that the collected material with be used to its fullest for research. Data extraction will be decided by an Expert Group which will be appointed by the Registry and Biobank Consortium (RBKON), which is open to all researchers at Region Västerbotten and Umeå University.
We are convinced that NorthPop over the coming decades will develop into a very valuable research resource at Umeå University and for all of Västerbotten and contribute to world-leading cutting edge research.
Structure and data collection
All pregnant women in Västerbotten are invited to participate in NorthPop together with their partner and their child (current pregnancy). The children (and the whole family) are then followed longitudinally 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 the Healthcare medical records system, the National Board of Health and Welfare’s diagnosis register, the Medical Register and the Statistics Sweden’s LISA register. The infrastructure currently covers 60% of the population in Västerbotten (Umeå and Skellefteå) and will be expanded with a branch in Lycksele to cover all of Västerbotten.
The data collection includes questionnaires and biological samples (Fig 1). We use an advanced web-based survey system that sends out automated SMS and e-mails to the participants with a link to the questionnaires. During pregnancy, four part-questionnaires are answered by the mother and four by the partner. A series of part-questionnaires are then sent out when the child is 4 months, 9 months, 18 months, 2 years, 3 years and 7 years old. The response rate is up to 90% for most of the questionnaires.
Biological sampling includes blood samples from the pregnant woman in gestational week 28. The quality of these blood samples is very good. Blood samples from the child are taken from the umbilical cord at birth and we get samples from over 95% of the participants and these samples are of exceptionally good quality. Blood sampling at 18 months of age began in March 2018 and the next blood sampling, when the children are 7 years old, will start in 2023. All blood samples are centrifuged and then the following aliquots are saved: 10 plasma tubes, 2 tubes buffy coat and 10 tubes erythrocytes.
Other biological samples collected include a urine sample from the mother during pregnancy (week 18) as well as saliva and fecal samples from the children at 1, 4, 9 and 18 months and also at 3 and 7 years of age. In addition, a urine sample from the child and a breast milk sample from the mother are collected at 1 month of age.
Fig 1. Overview of the data collection in NorthPop
Since the start in spring 2016, NorthPop has included over 9000 individuals (over 3000 families, data from November 2019). The goal is to include 10,000 families, i.e. 30,000 individuals, and this is expected to be achieved in 2023 according to current planning.
The database is located physically on servers at ICT Services at Umeå University and is located organizationally under Register Center North, Region Västerbotten. So far, it contains over 1 000 000 answers to questionnaire questions (data from November 2019).
The biobank containing NorthPop’s biological samples is stored in the Northern Sweden Biobank, Region Västerbotten. So far over 100 000 biological samples have been collected (aliquots of blood, urine samples, saliva samples, feces samples and breastmilk samples) (data from November 2019).
The amount of data in the database and the number of samples in the biobank will increase by factor 8 over the next six years.