Nordic Children and Adults Born Preterm (NORDCAP)

Duration:

2017–2025

Unit at THL:

Population Health

On other websites:

In the NORDCAP project we study how preterm birth and maternal pregnancy disorders predict offspring health, well-being and societal achievements of the offspring from childhood to adulthood. 

NORDCAP project includes two studies. In this webpage we describe the Nordic collaboration study, in which we investigate health and well-being of children and adults born preterm in Finland, Sweden, Norway and Denmark. 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 1987–2016, identified from the Finnish Medical Birth Register, THL (approximately 1 800 000 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:

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

Corresponding information is available from the Sweden, Norway and Denmark for Nordic comparisons.

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 will take place at the Finnish Institute for Health and Welfare, who is also the registrar of the study. Other registrars include Finnish Environment Institute, Norwegian University of Science and Technology (Trondheim, Norway) and Karolinska Institute (Stockholm, Sweden).

Data access is restricted to the researchers working at these institutions. The researchers can only access pseudonymised 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. Automatic journal of the interaction with data is kept.

Only data that are essential is used for the aims of 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. The need for storing the data is assessed regularly.

Tutkimuksen tietosuojailmoitus (pdf 350 kb, in Finnish)

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 Finnish Institute for Health and Welfare in the NORDCAP project include researchers from the following Nordic institutions:

  • Sweden: Karolinska Institute
  • Norway: Norwegian University of Science and Technology
  • Denmark: University of Copenhagen, Region H Healthcare services
  • Finland: Finnish Environment Institute

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

Funding

NORDCAP study is started as part of an EU-funded RECAP Research on Children and Adults Born Preterm -project. RECAP-project includes 20 partners from 12 European countries.
RECAP Research on Children and Adults Born Preterm

Other funders of the NORDCAP project are: European Comission, Academy of Finland, NORFACE  (DIAL research programme),  Foundation for Pediatric Research, Sakari Alhopuro Foundation, Signe ja Ane Gyllenberg Foundation, Sigrid Jusélius Foundation.

With the Nordic collaboration we are able to disentangle many challenges faced by previous studies. 

Contact information

Eero Kajantie
Research Manager, Professor
Tel. 029 524 8610
[email protected]

tietosuoja(at)thl.fi

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 kirjaamo(at)thl.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

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