Nordic Children and Adults Born Preterm (NORDCAP)

NORDCAP project includes two studies. In this webpage we describe the study, in which we investigate health and well-being of children and adults born preterm and intergenerational transmission of health and its mechanism, as well as broadly childhood and adolescent risk and resilience factors as predictors of later health and well-being in children born in Finland in 1987-2023. The NORDCAP project also includes also a study of individuals born in Finland in 1987–1990. Both studies use only register-based information.
The Finnish 1987–1990 Birth Cohort

Why study children and adults born preterm?

Globally, about one in ten children are born preterm, that is before 37 weeks of gestation. In Finland and in the Nordic countries one in every 16 children are born preterm. Preterm birth is the most common cause of death for newborn children. However, with the advances in neonatal care, 90% of children born preterm globally and 98% in Finland survive infancy.

In Finland and other high-income countries, the smallest 1%, those born preterm at very low birth weight (<1500 g) or very preterm (<32 weeks), account for up to half of perinatal and neonatal deaths and children with impairments and disabilities. They also are responsible for 20-30% of the health and educational budgets for children.

Majority of children born preterm lead a healthy life. However, children born preterm are at increased risk for many physical and mental health problems. They also attain lower education and have less children than children born at term. On the other hand, children born preterm have a smaller risk for some disorders, such as substance-use disorders and allergies. These factors and factors protecting preterm-born children are less known and they are not yet utilized to improve health and well-being of children born preterm.

Objectives

We compare the health and well-being of children and adults born preterm to those born at term, and assess the factors that can contribute to health and well-being. We will focus on the questions that cannot be answered without large register data. We will study the individual and societal burden caused by preterm birth and assess how this burden has developed as neonatal care has evolved. Using the large register data we can also study children born extremely preterm, who cannot be studied with smaller samples, especially if the outcome is rare.

We will also assess how factors causing preterm birth affect the long-term health of the children. These factors include for example pregnancy disorders, health of the parents and environmental exposures, such as air pollution. We will especially aim at identifying factors that are associated with good health and well-being. It is important to identify these protective factors so that care and support of preterm-born children can be developed.

In addition to the issues related to prematurity, we will also study health outcomes among parents of children with birth defects, intergenerational transmission of health and the underlying mechanisms, and risk and resilience factors in early life as predictors of later health.

Implementation

The Finnish study population includes all births in Finland during 1987–2023, identified from the Finnish Medical Birth Register, THL (approximately 2 100 000 children). In addition, we will use some information regarding family members to adjust for factors that the family members share.

The data are linked with other national registers, such as:

• Digital and Population Data Services Agency (DVV): Population Information System
• THL: the Finnish Care Register for Health Care, the Register for Primary Health Care, the Register for Congenital Malformations, and the Register for Induced Abortions
• The Cancer Register
• Social Insurance Institution (medical purchases and medical reimbursements for study specific diseases, social benefits)
• Statistics Finland (education, occupation and socioeconomic status, cause of death)

The study will use information from the whole spectrum of gestational ages, from children born extremely preterm to children born full term and post term. This will allow us to assess the differences between different levels of prematurity in comparison to full term birth.

Data protection

The study started at the Finnish Institute for Health and Welfare, but moved to University of Oulu in summer 2025. The University of Oulu is currently the registrar of the study. Data access is restricted to the researchers working at University of Oulu or other reputable research institutions based on a signed Data Access Agreement. The researchers will use the data only for the purposes of the NORDCAP research aims. The researchers can only access pseudonymized data, which means that the researchers cannot identify people directly. The researchers cannot access personal identifiable information. The research data are handled in a secure environment, and the access to the data is secured by personal user names and passwords. An automatic journal of interactions with the data is kept.

Only data essential for the aims of the research are used. All the data are classified. The purpose for using the data is scientific research of public interest. The data are stored for the duration of the study and the need for storing the data is assessed regularly.

Research Data Protection Notice (pdf 350 kb, in Finnish), File opens in a new tab

Research group and partners

The person responsible for the study is Professor, Specialist in Pediatrics, Clinical Genetics and Public Health Eero Kajantie. Collaborators of the University of Oulu in the NORDCAP project include researchers from the following institutions:

• Finland: University of Helsinki, Hospital District of Helsinki and Uusimaa (HUS), Finnish Environment Institute, the Finnish Institute for Health and Welfare (THL)
• Sweden: Karolinska Institute
• Norway: Norwegian University of Science and Technology
• Denmark: University of Copenhagen, Region H Healthcare services
• Ireland: University of Dublin

The project also includes collaboration with the members of the EU-funded IMPROVE research consortium.

Funding

NORDCAP study is started as part of an EU-funded RECAP Research on Children and Adults Born Preterm -project, and after it’s completion will continue in the IMPROVE PRETERM project.

Other funders of the NORDCAP project are: European Commission, Research Council Finland, NORFACE (DIAL research programme), Foundation for Pediatric Research, Juho Vainio Foundation, Päivikki and Sakari Sohlberg Foundation, Sakari Alhopuro Foundation, Signe ja Ane Gyllenberg Foundation, Sigrid Jusélius Foundation, Kone Foundation.

Contact information

Project leader

Eero Kajantie

firstname.lastname(at)oulu.fi

Data Protection Officer

Data protection legislation grants the study participant specific rights that the participant may exercise to ensure privacy as one of fundamental rights. Should you wish to exercise these rights, please contact dpo(at)oulu.fi.

You have the right to make an appeal to the Office of the Data Protection Ombudsman, if you consider that prevailing data protection legislation has not been followed when your personal data have been used.

Office of the Data Protection Ombudsman
Street address: Lintulahdenkuja 4, 00530 Helsinki
Mail address: PL 800, 00531 Helsinki
Telephone: +358 29 566 6700
E-mail: tietosuoja(at)om.fi