RECAP preterm – Research on European Children and Adults born Preterm

Background: from data collection to data sharing

The overall aim of the EU-funded research project RECAP preterm is to improve health, development, and quality of life of children and adults born very preterm (VP) or with a very low birth weight (VLBW):

  • VP: less than 32 weeks of gestation
  • VLBW: less than 1500 g

The innovative element of RECAP preterm is to provide the bridge from data collection to data sharing: the members aim to establish a digital platform for harmonising and exploiting data of European cohort studies with babies, children, and adults born preterm as well as Nordic registry data. This broadened data basis shall ensure improved understanding, diagnosis and evidence-based, personalised prevention of mental and somatic disorders that are associated with preterm birth. Long term effects of different treatments, especially the use of (off-label) medication applied for these patients are meant to be analysed by combining adult cohorts with available data from preterm babies. By developing mHealth applications, the cohort participants shall be encouraged to sustainably collect follow-up data (mHealth/mobile health = the use of information and communication technology for collecting health data, delivery of healthcare information, monitoring of patient vital signs, and telemedicine).

Have a look at the official project website to gain deep insights into the project: Recap preterm website




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Core steps

RECAP preterm:

  • created a sustainable data platform of national and European cohorts of VP/VLBW children and adults to optimise the use of population data for research and innovation in healthcare and policy (view more).
  • develops hypothesis-driven research on health status and medical care of VP/VLBW children and adults that builds on the unique opportunities provided by the larger sample sizes of combined cohorts and the added value of their geographic and temporal diversity.
  • integrates exchange with various stakeholders to disseminate results and to translate them into evidence-based care and policy (e.g. obstetricians, neonatologists, paediatricians, psychologists, psychiatrists, other healthcare providers, educators, scientists, economists, policy planners, health insurance companies, and patient and parent groups).
  • emphasises patient and public involvement in order to reflect real-world needs.

Members and Partners

The RECAP preterm consortium

RECAP preterm brings together European child to adult cohorts and a group of highly experienced organisations. The expertise of the partners covers a wide and complementary range of fields, including life course epidemiology, methodology, neonatology, paediatrics, early-life stressors, non-communicable disease research, epigenomics, economics, psychology, and mental health as well as e-learning technologies, eHealth/mHealth applications, communication, dissemination and project management.

Have a look at the official project website to gain deeper insights into the project, to find out how to make use of the RECAP preterm data platform or how to add the data of your cohort to the RECAP preterm platform.

EFCNI´s role within RECAP

EFCNI represents the patient’s voice and is work package leader of the dissemination and communication activities. In particular, EFCNI’s role in RECAP preterm lies in leading all activities regarding dialogue, dissemination, and sustainability by reaching out to the scientific community, clinicians, healthcare professionals, patient organisations, the general public, policy makers, and other potential stakeholders at the national, European, and international level to increase the visibility as well as the health and societal impact of RECAP preterm. A particular focus is placed on parents in the interaction and dissemination strategy in particular to identify and answer user-driven research questions and policy needs.

Do you want to learn more about EFCNI´s role in RECAP preterm and patient involvement as well as EFCNI´s role in research projects, please watch:

E-Learning course

The Recap preterm E-Learning course will give you insights into:

  • very preterm cohorts and collaborative research principles and technique
  • new research on children and adults born very preterm based on pooled data
  • how to implement a collaborative research protocol – including the ethical and legal requirements, procedures for harmonising data, the technological aspects of storing and sharing data, and analytic approaches and software

Access the E-Learning course to learn more about the RECAP preterm platform and project.

Please note

This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 733280.