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Report

Teaser, summary, work performed and final results

Periodic Reporting for period 1 - RECAP preterm (RECAP preterm: Research on European Children and Adults born Preterm)

Teaser

Summary

Infants born very preterm (VPT, before 31 weeks of gestation) or very low birth weight (VLBW, birthweight less than 1500 grams), about 1-2% of all births, account for up to half of perinatal and infant deaths, and those surviving have a high rate of impairments. They account for about a third of the health budgets for children across Europe in the first years of life. There is accumulating evidence that being born VPT/VLBW increases the risk of non-communicable diseases such as increased metabolic diseases, learning disability or reduced mental health and lower employment rate and higher reliance on social benefits in adulthood.
The aim of the RECAP preterm Project is to improve the health, development and quality of life of VPT/VLBW children and adult by optimizing the use of population data for research and innovation in healthcare, social and education policy and ultimately reduce long term costs. Many countries have set up studies to follow VPT/VLBW after they are discharged from the neonatal unit in order to describe their health and development and to identify the resiliency factors that promote adaptive development. This project creates a sustainable, geographically diverse and multidisciplinary research platform that brings together these European cohorts. The Platform initially includes 20 cohorts constituted over a 30 year time span, but is designed to include new cohorts from Europe and other countries in the future. The platform also integrates routinely collected registry data from the Nordic countries. Finally, new methodologies and tools to strengthen research on current and future VPT/VLBW cohorts are developed.

Work performed

In the first 18 months of the project, work focused on three main areas:

(1) Building a foundation for a sustainable research platform
(2) Developing the RECAP preterm research agenda and implementation plan.
(3) Dissemination to stakeholders and promotion of patients and public involvement

(1) Building a foundation for a sustainable research platform.
The consortium began work to create a governance structure, including agreeing on and organising privacy, ethical, legal and scientific aspects, data sharing and data access. Work in this area will continue to establish an agreement with partner institutions that ensures the continuation of the RECAP preterm Platform after the projectâ€™s end in 2021.

The groundwork for mapping the cohorts and implementing a data management system for sharing harmonised data was laid. The cohorts are complex studies, with thousands of variables across multiple time points. This work entailed collecting information about the cohorts, establishing a conceptual schema for cataloguing data, developing the technical architecture for the platform and ensuring a working interface between technical and conceptual specifications. Work to build the platform will continue, however, a framework now exists to start RECAP preterm research.

Progress was achieved on the development of methods and tools, including a workshop on methods for harmonizing data, background work to integrate social media and mobile technology into the platform and a qualitative research protocol on loss to follow-up.

Finally, the RECAP preterm Platform associated other international cohorts. The Adult Preterm International Collaboration (http://www.apic-preterm.org/) with cohorts in Australia, New Zealand, Canada, the USA and other European cohorts who are not partners of RECAP preterm are participating in mapping and harmonising data for scientific analysis of protective and resiliency factors.

(2) Developing the RECAP preterm research agenda and implementation plan.

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

Important strides were made to identify the research priorities for contemporary cohorts of children born very preterm. Background literature reviews, including the over 500 articles on children from birth to 12 years of age published by participating RECAP preterm cohorts, formed the basis for a consensus process on research themes. This consensus process brings together over 50 external experts (researchers, clinicians, policy makers, user advocates, parents and adults who were born preterm) to identify and rank priority research themes. Twenty-eight themes were initially identified and the first results have highlighted a set of 10 considered of high importance. These results will determine the research areas implemented starting in the autumn of the 2018.

The research strand on adults reviewed existing research to identify key functional outcomes (e.g., mental health) and those that reflect the life chances of those born VPT/VLBW in adulthood such as employment and social support. A meta-analyses of existing evidence on indicators of wealth was published (Pediatrics, 2018) and on social support outcomes is on-going. Measures of these outcomes were then mapped across the RECAP preterm and APIC cohorts of VPT/VLBW into adulthood. A parallel process has been on-going to identify and map resiliency factors that enhance the development of VPT/VLBW across childhood into adulthood. Thirdly, a common set of risk factors has been identified to determine what complications and interventions peri- and neonatally and in early childhood have still adverse or promotive effects for adulthood outcomes.

Working with the

Final results

In its first 18 months, the establishment of the RECAP preterm platform, implemented by a consortium of multidisciplinary experts, brought together a wealth of knowledge and expertise. By pooling and harmonising data from VPT and VLBW cohorts, this platform goes beyond the current state of the art to make these valuable data findable, accessible, interoperable and reusable. In the next period, research studies are expected to yield impactful results to improve health and quality of life of children and adults born very preterm birth.