NorthPop is a research infrastructure at Umeå University and Region Västerbotten. It consists of a database and biobank containing extensive population-based, longitudinal data. These are collected from 30 000 individuals, that is besides 10 000 children also their parents, who are 32 years of age on average.
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 the majority of our lifestyle-related diseases and behaviors are established early in life. Children and young adults account for 50% (130 000 individuals) of the population in Västerbotten. NorthPop 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. More than 40 PhD researchers are involved in NorthPop, at many different clinics of Region Västerbotten and departments of Umeå University. Already under the first years researchers started 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 infrastructure is expected to increase significantly, and the steering committee will work to ensure that the collected material is 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 developes into a highly valuable research resource at Umeå University and for all of Västerbotten and contribute to world-leading cutting edge research.
Structure and data collection
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 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 covers the population in all of Västerbotten since 2021.
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.
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 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, from autumn 2023. All blood samples are centrifuged and then the following portions are saved: 10 test tubes plasma, 2 test tubes white blood cells (buffy coat) and 10 test tubes red blood cells (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 24 000 individuals (over 8000 families, data from October 2023). The goal is to include 10,000 families, i.e. 30,000 individuals, and this is expected to be achieved in 2025 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 10 million answers to questionnaire questions (data from May 2023).
The biobank containing NorthPop’s biological samples is stored in the Northern Sweden Biobank, Region Västerbotten. So far over 300 000 biological samples have been collected (aliquots of blood, urine samples, saliva samples, feces samples and breastmilk samples) (data from May 2023).