RECAP preterm

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.

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: https://recap-preterm.eu/module-10/

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.

Series about the RECAP preterm cohorts

In a year-round series, we reported about several cohorts of the RECAP preterm project. Read more about:

• Part 1: the ESTONIA I & II cohorts
• Part 2: the cohorts of the EPICure Studies in the United Kingdom and Ireland
• Part 3: the Project Extreme Prematurity (PEP) from Norway
• Part 4: the NTNU Low Birth Weight Life study from Norway
• Part 5: the Bavarian Longitudinal Study (BLS)/Bayerische Entwicklungsstudie (BEST)
• Part 6: the POPS (Project On Preterm and Small for gestational age infants) cohort from the Netherlands
• Part 7: the EPIBEL (Extremely Preterm Infants in Belgium) cohort from Belgium
• Part 8: the AYLS (Arvo Ylppö Longitudinal Study) cohort from Finland

In order to establish a more holistic perspective of any intervention, follow-up investigations are essential to gain a comprehensive understanding of both short- and long-term consequences. With this idea in mind, the RECAP Preterm project consortium developed the RECAP Preterm Cohort Platform, a sustainable, geographically diverse and multidisciplinary database of national and European cohorts of babies born very preterm or with very low birth weight (VPT/ VLBW cohorts). This data platform can help to reduce ethical, administrative and technical barriers to collaboration in research and create positive incentives for engagement from research teams around the world. It will enable timely responses to emergent questions about e.g. best care or social policy for children and adults born very preterm or with low birth weight. Particularly the focus on bridging the gap between data collection and data sharing encompasses an outlook that goes beyond the timeframe of the original project timeline.  

By using the data and adding further knowledge through new cohorts or updated information on existing studies, RECAP Preterm can become a sustainable European platform for research and health care innovation. 

One project which feeds into the RECAP Preterm Cohort Platform is LIFT-UP Preterm. The LIFT-UP Preterm project uses a new innovative method to enable follow-up of very preterm patients in randomised-controlled trials, and the use of data from observational population-based cohorts to enhance analyses. 

Objectives of the LIFT-UP Preterm project

LIFT-UP Preterm aims to expand and deploy the existing European RECAP Preterm Cohort Platform by: 

1. Creating a data entry tool integrated into the RECAP Preterm data platform, based on the open source PARCA-R, a parent completed questionnaire that can be used to assess children’s cognitive and language development at 24 months of age. 
2. Conducting a proof-of-concept study using the TREOCAPA trial, a pan-European, multi-centre randomised-controlled trial (see: TREOCAPA – EFCNI); 
3. Elaborating an exploitation plan and roadmap for sustainability and expansion of these tools, methods, and infrastructure, with the input of external experts and key stakeholders. 

For more information on LIFT-UP Preterm, please visit the LIFT-UP Preterm project page .  

Take a look at the poster below to learn more about the aims of LIFT-UP Preterm :

Poster

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