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RECAP preterm: Research on European Children and Adults born Preterm

Periodic Reporting for period 2 - RECAP preterm (RECAP preterm: Research on European Children and Adults born Preterm)

Reporting period: 2018-07-01 to 2019-12-31

Infants born very preterm (VPT, before 32 weeks of gestation) or very low birth weight (VLBW, birthweight less than 1500 grams) account for up to half of perinatal and infant deaths, children with impairments and disabilities and more than a third of the health and educational budgets for children across Europe. Being born VPT or VLBW is associated with a higher risk of chronic diseases and reduced mental health, quality of life, partnering, family life and employment chances and wealth in adulthood.
The aim of the RECAP preterm Project is to improve the health, development and quality of life of VPT/VLBW children and adults by optimizing the use of population data for research and innovation in healthcare, social and education policy. It creates the RECAP Preterm Platform, a sustainable, geographically diverse and multidisciplinary database of national and European VPT/ VLBW cohorts. The Platform initially includes 23 European cohorts constituted over a 30 year time span and is designed to include new cohorts in the future.
An additional objective is to create novel methodologies and tools for data collection, management and analysis on current and future VPT/VLBW cohorts. This aim includes tasks to develop statistical methods, applications that can be used to collect data and strategies to reduce loss to follow-up over time.
In the first 36 months of the project, work focused on three main areas:

(1) Building a sustainable research platform

The consortium has undertaken the groundwork to develop a robust governance structure which covers ethical, legal and scientific aspects, data sharing and data access. This work will be formalised in the Terms of Use for the platform which ensures sustainability after the project’s end in 2021.

A large amount of the work to-date has focused on developing a data cataloguing and management system to facilitate sharing of harmonised data. The cohorts are complex studies, with thousands of variables, across multiple time points and based on a diverse array of standardised and non-standardised instruments. This work entailed collecting meta-data from the cohorts, establishing a novel conceptual schema for data catalogues, specifying the platform’s technical architecture and ensuring a working interface between technical and conceptual specifications.

Progress was achieved on the development of methods and tools, including methods for harmonising data across studies and software development using DataShield for complex statistical analyses (multiple imputation for loss to follow-up, survival analysis). Work was also completed on the prototype for a mobile application and an e-cohort for adults born very preterm was launched.

Finally, the RECAP preterm Platform associated other international cohorts. Other cohorts that are part of the Adult Preterm International Collaboration ( are participating in mapping and harmonizing data for scientific analysis of protective and resiliency factors.

(2) Launching the RECAP Preterm research agenda on the consequences of very preterm birth

Three research strands make up the RECAP preterm research agenda: (i) hypothesis-driven research on priority themes using contemporary child cohorts, (ii) research on universal outcomes and protective factors and resiliency within adult cohorts (iii) life-course research on very preterm birth developed using the Nordic register data.

Priority themes have been identified for research on child cohorts based on a formalised consensus process within the consortium and with an external panel of 64 stakeholders. This process elicited a broad range of research priorities on the consequences of VPT birth. The most highly rated themes informed the selection of 3 demonstration projects considered to be immediately feasible (Care and outcomes of extremely preterm birth; Growth and nutrition; Impact of social circumstances on outcomes) and 2 areas for further development (Education; Parental stress). These research demonstration projects are on-going.

The research strand on adults reviewed existing research on functional outcomes (e.g. neuro-cognition, mental health or health related quality of life) and those that reflect the life chances and integration into society of those born VPT/VLBW such as employment, receipt of social benefits, independent living, social relationships and support. Meta-analyses of evidence on indicators of wealth, social relationships and quality of life in adulthood are or about to be published. Measures of adult outcomes have been mapped across the RECAP Preterm and APIC cohorts, data transfer agreements are signed and the data are transferred via the established data nodes. The parallel process of mapping protective, promotive and resiliency factors that might enhance the development of VPT/VLBW across childhood into adulthood has been completed.. A systematic review of the statistical methodology on testing for protective and promotive factors and resiliency is under way. Fourthly, the comparison of longitudinal studies that have assessed similar childhood functioning within the same countries (Germany, the Netherlands, Finland) is under way after the signing of most of the data transfer agreements. This is to determine how changes in care may have affected quality of survival in different eras of neonatal care (1980s versus 2000s).

Work on research using the Nordic registers (WP8) has advanced in making population-based registry data from the four Nordic countries accessible to data pooling. The technical work is done in concertation with the RECAP Preterm Data platform (WP3 and WP4) in order to ensure synergy with VPT/VLBW cohorts’ research. Using the combined registry-based datasets from Nordic countries provides access to 10,000,000 index persons making it possible to study the whole spectrum of gestational ages (GA) with high statistical power. Research projects on mortality, autism-spectrum disorder, educational attainment and obstructive respiratory diseases are on-going.

(3) Dissemination to stakeholders and promotion of patients and public involvement

The European Foundation for the Care of Newborn Infants (EFCNI), a European-level patient organization, is actively involved in all parts of the project. This ensures that parental and patient perspectives are integrated into the platform’s design and outputs. A “living” stakeholder map for RECAP preterm has been set up to encourage stakeholder engagement in project tasks. The RECAP-preterm project has been presented and discussed with parent organizations across Europe in a parent stakeholder meeting by the EFCNI.

A key component of the dissemination plan is a week-long Winter School in December 2020to train early career researchers to use the RECAP Preterm platform and to develop their research ideas into protocols for the platform.
In its first 36 months, the establishment of the RECAP preterm platform brought together a wealth of knowledge and expertise. By pooling and harmonizing data from VPT/VLBW cohorts, this platform goes beyond the current state of the art by making these valuable data findable, accessible, interoperable and reusable (FAIR). Over 20 research studies are on-going using data compiled in this project and will demonstrate the potential of collaborative research as well as yield impactful results to improve health and quality of life of children and adults born very preterm birth.