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Standards presented at NIDCAP meeting in Brussels

The international ‚roadshow‘ about the European Standards of Care for Newborn Health is in full swing. On 16 May Dr Johanna Walz from EFCNI presented the standards and the Call to Action for Newborn Health in Europe at the NIDCAP (abbreviated for Newborn Individualized Developmental Care and Assessment Program) meeting on “Infant- and family-centred care” in Brussels, Belgium. We very much thank the NIDCAP team for the kind invitation. View more about the European Standards of Care for Newborn Health…
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Series of RECAP cohorts – part 2: presenting the cohorts of the EPICure Studies in the United Kingdom and Ireland

In our new series about cohorts of the EU-funded project „Research on European Children and Adults born Preterm“ (RECAP preterm), we recently reported about the ESTONIA I & II cohorts. We are happy to present you a second example, the cohorts of the EPICure studies in the United Kingdom and Ireland. Find out more in this article by the current team of lead researchers, Professor Neil Marlow, Professor Elizabeth Draper, and Dr Samantha Johnson. “EPICure” is a series of studies…
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Very preterm babies: Large differences in the use of specialist health services in different European countries

Very preterm babies (born earlier than 32 weeks gestational age) suffer more frequently from various impairments, such as motor, hearing, vision, developmental and cognitive impairments, compared to term babies, and the earlier the baby is born, the higher the risk of facing difficulties. As a matter of fact, of all babies born extremely preterm (22-27 weeks), between 21% and 35% suffer from moderate to severe neurological disability in childhood, and 40% of babies born extremely preterm have a severe health…
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EFCNI supports study by c4c research collaboration on paracetamol in preterm babies

Since last year, EFCNI has been involved as a third party representing the voice of patients and parents in the new conect4children (c4c) consortium, a research collaboration to build a European paediatric clinical trial network that aims to facilitate the development of new drugs and other therapies for the entire paediatric population. c4c now announced that it selected its first portfolio of pan-European paediatric studies aimed at advancing the understanding of high priority medicines commonly used in babies, children, and young people in Europe.…
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New series on cohorts of the Research on European Children and Adults born Preterm (RECAP preterm) project

Our new series presents the cohorts of the EU-funded project „Research on European Children and Adults born Preterm“ (RECAP preterm), which aims at contributing to a better understanding on the long-term effects of preterm birth and thus to an improvement of the follow-up of these children. A research cohort is a group of people who share a defining characteristic, e.g. in the case of RECAP preterm, the cohorts consist of children (and later adults) born very preterm or with very…
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Euro-Peristat – more and better data for perinatal health

Euro-Peristat is a European research project that aims to improve perinatal health. The project collaborators and contributing experts developed common tools to assess perinatal health problems and health care in Europe and to monitor changes over time. These data are needed by clinicians, policy makers and parents for evaluating the situation in their countries and for making decisions about the health and healthcare of pregnant women and newborns. Euro-Peristat makes data available in reports, on their website and in scientific…
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Training for parent organisations: workshop on the implementation of the standards

Training and knowledge about the European Standards of Care for Newborn Health are key for their implementation in the different countries. This is why EFCNI is thrilled to welcome another group of parent organisation representatives from 12 countries for a “Level III” training workshop (22 to 23 February) in Munich – again with an extra “crash course” for parent organisations who have never attended a workshop on the standards before. The workshop offers a broad perspective on aspects that are…
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Regulatory Science to 2025 strategy – The European Medicine Agency (EMA) asks for stakeholders’ feedback

The European Medicine Agency (EMA) has published its draft on a "Regulatory Science to 2025" strategy  for public consultation. Regulatory science is defined as the range of scientific disciplines that are applied to the quality, safety and efficacy assessment of medicinal products and that inform regulatory decision-making throughout the lifecycle of a medicine. The proposed strategy seeks to offer informed guidance on modern medicines development, facilitate the optimisation of regulatory science and critically assess…
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EFCNI shares a parental view on cluster randomised controlled trials in newborn babies

EFCNI has repeatedly expressed concern about the lack of evidence in the treatment of newborn babies and has called for more research in this field. EFCNI is firmly convinced that more clinical trials are needed to develop new, safe and efficient treatments for newborns that are based on hard evidence. However, it is just as important to conduct the trials following high ethical and clinical standards. In a recent article, published in the scientific…
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Collecting quality data is key: registries of babies treated for Retinopathy of Prematurity (ROP) can improve health, care, and science

Retinopathy of Prematurity (ROP) is a disease of the eye affecting preterm born babies. It is characterised by changes in the developing blood vessels of the retina (the light-sensitive layer in the back of the eye that sends visual signals to the brain). All preterm babies born before around 31 weeks of pregnancy or having a birth weight of less than 1,250g to 1,500g need to have eye examinations by a specialised eye doctor, called ophthalmologist, to check how the…
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