Improve Preterm

Website

Improve Preterm Improving lifelong health and care for babies born very preterm โ€“ with families, clinicians, and researchers across Europe.

Research headlines can make answers sound simple. ๐Ÿ’›โ€œStudy findsโ€ฆโ€โ€œResearchers showโ€ฆโ€โ€œTreatment improvesโ€ฆโ€But one study i...
07/10/2026

Research headlines can make answers sound simple. ๐Ÿ’›
โ€œStudy findsโ€ฆโ€
โ€œResearchers showโ€ฆโ€
โ€œTreatment improvesโ€ฆโ€
But one study is rarely the whole answer.

A study usually looks at ๐—ฎ ๐˜€๐—ฝ๐—ฒ๐—ฐ๐—ถ๐—ณ๐—ถ๐—ฐ ๐—พ๐˜‚๐—ฒ๐˜€๐˜๐—ถ๐—ผ๐—ป, ๐—ถ๐—ป ๐—ฎ ๐˜€๐—ฝ๐—ฒ๐—ฐ๐—ถ๐—ณ๐—ถ๐—ฐ ๐—ด๐—ฟ๐—ผ๐˜‚๐—ฝ ๐—ผ๐—ณ ๐—ฝ๐—ฒ๐—ผ๐—ฝ๐—น๐—ฒ, ๐—ฎ๐˜ ๐—ฎ ๐˜€๐—ฝ๐—ฒ๐—ฐ๐—ถ๐—ณ๐—ถ๐—ฐ ๐—ฝ๐—ผ๐—ถ๐—ป๐˜ ๐—ถ๐—ป ๐˜๐—ถ๐—บ๐—ฒ. It may tell us something important, but that does not automatically mean the finding applies in exactly the same way to everyone, everywhere, or years later. ๐ŸŒฑ

For example, a treatment might improve an outcome during the neonatal period. But families may still want to know: What happens later in childhood? Does the benefit last? Are there other effects? Does it make a difference to health, development, or daily life over time? ๐Ÿ’ญ

Researchers build stronger evidence by looking across studies, comparing groups, examining different outcomes, and understanding where findings agree and where they do not. Sometimes, two studies may even seem to contradict each other when they are actually asking slightly different questions or measuring different things. That is why ๐—ฎ ๐—ฟ๐—ฒ๐˜€๐—ฒ๐—ฎ๐—ฟ๐—ฐ๐—ต ๐—ณ๐—ถ๐—ป๐—ฑ๐—ถ๐—ป๐—ด ๐—ฐ๐—ฎ๐—ป ๐—ฏ๐—ฒ ๐—ถ๐—บ๐—ฝ๐—ผ๐—ฟ๐˜๐—ฎ๐—ป๐˜ ๐˜„๐—ถ๐˜๐—ต๐—ผ๐˜‚๐˜ ๐—ฏ๐—ฒ๐—ถ๐—ป๐—ด ๐˜๐—ต๐—ฒ ๐—ณ๐—ถ๐—ป๐—ฎ๐—น ๐—ฎ๐—ป๐˜€๐˜„๐—ฒ๐—ฟ.

๐—ฅ๐—ฒ๐˜€๐—ฒ๐—ฎ๐—ฟ๐—ฐ๐—ต ๐—ฏ๐˜‚๐—ถ๐—น๐—ฑ๐˜€ ๐˜‚๐—ป๐—ฑ๐—ฒ๐—ฟ๐˜€๐˜๐—ฎ๐—ป๐—ฑ๐—ถ๐—ป๐—ด ๐—ฝ๐—ถ๐—ฒ๐—ฐ๐—ฒ ๐—ฏ๐˜† ๐—ฝ๐—ถ๐—ฒ๐—ฐ๐—ฒ and careful interpretation is part of what turns individual findings into evidence we can rely on. โœจ

30/09/2026

๐—ช๐—ต๐—ฎ๐˜ ๐—ฑ๐—ผ ๐—ฝ๐—ฒ๐—ผ๐—ฝ๐—น๐—ฒ ๐—ผ๐—ณ๐˜๐—ฒ๐—ป ๐—บ๐—ถ๐˜€๐˜‚๐—ป๐—ฑ๐—ฒ๐—ฟ๐˜€๐˜๐—ฎ๐—ป๐—ฑ ๐—ฎ๐—ฏ๐—ผ๐˜‚๐˜ ๐—น๐—ถ๐—ณ๐—ฒ ๐—ฎ๐—ณ๐˜๐—ฒ๐—ฟ ๐˜ƒ๐—ฒ๐—ฟ๐˜† ๐—ฝ๐—ฟ๐—ฒ๐˜๐—ฒ๐—ฟ๐—บ ๐—ฏ๐—ถ๐—ฟ๐˜๐—ต? ๐Ÿ’œ

In this ๐—™๐—ฎ๐—บ๐—ถ๐—น๐˜† ๐—ฉ๐—ผ๐—ถ๐—ฐ๐—ฒ๐˜€ video, members of the IMPROVE PRETERM ๐—ฃ๐—ฎ๐—ฟ๐—ฒ๐—ป๐˜ ๐—ฎ๐—ป๐—ฑ ๐—ฃ๐—ฎ๐˜๐—ถ๐—ฒ๐—ป๐˜ ๐—”๐—ฑ๐˜ƒ๐—ถ๐˜€๐—ผ๐—ฟ๐˜† ๐—•๐—ผ๐—ฎ๐—ฟ๐—ฑ share reflections from different countries and perspectives โ€“ as parents of children born preterm and as people with lived experience of prematurity.

Their answers point to something important: ๐—น๐—ถ๐—ณ๐—ฒ ๐—ฎ๐—ณ๐˜๐—ฒ๐—ฟ ๐˜ƒ๐—ฒ๐—ฟ๐˜† ๐—ฝ๐—ฟ๐—ฒ๐˜๐—ฒ๐—ฟ๐—บ ๐—ฏ๐—ถ๐—ฟ๐˜๐—ต ๐—ฑ๐—ผ๐—ฒ๐˜€ ๐—ป๐—ผ๐˜ ๐—ฎ๐—น๐˜„๐—ฎ๐˜†๐˜€ ๐—ณ๐—ผ๐—น๐—น๐—ผ๐˜„ ๐˜๐—ต๐—ฒ ๐˜€๐—ถ๐—บ๐—ฝ๐—น๐—ฒ ๐˜€๐˜๐—ผ๐—ฟ๐˜† ๐—ฝ๐—ฒ๐—ผ๐—ฝ๐—น๐—ฒ ๐—บ๐—ฎ๐˜† ๐—ฒ๐˜…๐—ฝ๐—ฒ๐—ฐ๐˜. Many people think that once a baby leaves the hospital, everything is fine. Others may assume that children born very preterm simply โ€œcatch upโ€ in the early years, or that prematurity is only a difficult start that eventually becomes part of the past.

But for many families and people born very preterm, ๐˜๐—ต๐—ฒ ๐—ท๐—ผ๐˜‚๐—ฟ๐—ป๐—ฒ๐˜† ๐—ฐ๐—ฎ๐—ป ๐—ฏ๐—ฒ ๐—น๐—ผ๐—ป๐—ด๐—ฒ๐—ฟ, ๐—บ๐—ผ๐—ฟ๐—ฒ ๐—ฐ๐—ผ๐—บ๐—ฝ๐—น๐—ฒ๐˜…, ๐—ฎ๐—ป๐—ฑ ๐—น๐—ฒ๐˜€๐˜€ ๐˜ƒ๐—ถ๐˜€๐—ถ๐—ฏ๐—น๐—ฒ ๐—ณ๐—ฟ๐—ผ๐—บ ๐˜๐—ต๐—ฒ ๐—ผ๐˜‚๐˜๐˜€๐—ถ๐—ฑ๐—ฒ. It may include health questions, developmental follow-up, emotional stress, anxiety, uncertainty, and the long-lasting impact of the NICU experience. ๐ŸŒฑ

As Paula Guerra shares in the video, prematurity is not just an early start. It can shape a personโ€™s entire life. This is why family and patient voices matter in IMPROVE PRETERM. They help research stay connected to the realities behind the outcomes, the questions behind the data, and the experiences families may carry long after discharge. ๐Ÿ’ฌ

A heartfelt ๐˜๐—ต๐—ฎ๐—ป๐—ธ ๐˜†๐—ผ๐˜‚ to Elลผbieta, Paula, Dina, Vilni, Lauren, and Mirva for sharing their voices with us. ๐Ÿค

๐——๐—ฎ๐˜๐—ฎ ๐—ฎ๐—ป๐—ฑ ๐—น๐—ถ๐˜ƒ๐—ฒ๐—ฑ ๐—ฒ๐˜…๐—ฝ๐—ฒ๐—ฟ๐—ถ๐—ฒ๐—ป๐—ฐ๐—ฒ ๐—ฏ๐—ผ๐˜๐—ต ๐—บ๐—ฎ๐˜๐˜๐—ฒ๐—ฟ ๐—ถ๐—ป ๐—œ๐— ๐—ฃ๐—ฅ๐—ข๐—ฉ๐—˜ ๐—ฃ๐—ฅ๐—˜๐—ง๐—˜๐—ฅ๐— . ๐Ÿ’› ๐——๐—ฎ๐˜๐—ฎ can help researchers see patterns: in health, developme...
23/09/2026

๐——๐—ฎ๐˜๐—ฎ ๐—ฎ๐—ป๐—ฑ ๐—น๐—ถ๐˜ƒ๐—ฒ๐—ฑ ๐—ฒ๐˜…๐—ฝ๐—ฒ๐—ฟ๐—ถ๐—ฒ๐—ป๐—ฐ๐—ฒ ๐—ฏ๐—ผ๐˜๐—ต ๐—บ๐—ฎ๐˜๐˜๐—ฒ๐—ฟ ๐—ถ๐—ป ๐—œ๐— ๐—ฃ๐—ฅ๐—ข๐—ฉ๐—˜ ๐—ฃ๐—ฅ๐—˜๐—ง๐—˜๐—ฅ๐— . ๐Ÿ’›

๐——๐—ฎ๐˜๐—ฎ can help researchers see patterns: in health, development, follow-up, interventions, and long-term outcomes after very preterm birth. It can show what happens across groups, countries, care settings, and stages of life. ๐ŸŒฑ

But data alone cannot always explain what those patterns mean in everyday life. That is where ๐—น๐—ถ๐˜ƒ๐—ฒ๐—ฑ ๐—ฒ๐˜…๐—ฝ๐—ฒ๐—ฟ๐—ถ๐—ฒ๐—ป๐—ฐ๐—ฒ matters. Families and people born very preterm can help show how outcomes are experienced at home, in school, in follow-up care, in daily routines, and over time. They can point to questions that may not be obvious from the numbers alone: What support is actually available? What makes care easier to access or harder? What affects wellbeing, participation, independence, or family life? ๐Ÿงฉ

In IMPROVE PRETERM, these perspectives help connect what research can measure with what families and people born very preterm experience. The goal is not only to collect more information. It is to ๐—ฏ๐˜‚๐—ถ๐—น๐—ฑ ๐—ฒ๐˜ƒ๐—ถ๐—ฑ๐—ฒ๐—ป๐—ฐ๐—ฒ ๐˜๐—ต๐—ฎ๐˜ ๐—ถ๐˜€ ๐˜‚๐˜€๐—ฒ๐—ณ๐˜‚๐—น ๐—ณ๐—ผ๐—ฟ ๐—ฐ๐—ฎ๐—ฟ๐—ฒ, ๐—ณ๐—ผ๐—น๐—น๐—ผ๐˜„-๐˜‚๐—ฝ, ๐—ฎ๐—ป๐—ฑ ๐—น๐—ถ๐—ณ๐—ฒ๐—น๐—ผ๐—ป๐—ด ๐—ต๐—ฒ๐—ฎ๐—น๐˜๐—ต ๐—ฎ๐—ณ๐˜๐—ฒ๐—ฟ ๐˜ƒ๐—ฒ๐—ฟ๐˜† ๐—ฝ๐—ฟ๐—ฒ๐˜๐—ฒ๐—ฟ๐—บ ๐—ฏ๐—ถ๐—ฟ๐˜๐—ต. ๐Ÿ’ฌ Research becomes stronger when data and lived realities are brought into conversation. โœจ

Learn more on our website: https://improve-preterm.eu/

From September 12-18, we celebrate ๐—ก๐—ฒ๐—ผ๐—ป๐—ฎ๐˜๐—ฎ๐—น ๐—ก๐˜‚๐—ฟ๐˜€๐—ฒ๐˜€ ๐—ช๐—ฒ๐—ฒ๐—ธ. ๐Ÿ’›๐—ก๐—ฒ๐—ผ๐—ป๐—ฎ๐˜๐—ฎ๐—น ๐—ป๐˜‚๐—ฟ๐˜€๐—ฒ๐˜€ ๐—ฐ๐—ฎ๐—ฟ๐—ฒ ๐—ณ๐—ผ๐—ฟ ๐—ฏ๐—ฎ๐—ฏ๐—ถ๐—ฒ๐˜€ ๐—ฑ๐˜‚๐—ฟ๐—ถ๐—ป๐—ด ๐˜€๐—ผ๐—บ๐—ฒ ๐—ผ๐—ณ ๐˜๐—ต๐—ฒ ๐—บ๐—ผ๐˜€๐˜ ๐—บ๐—ฒ๐—ฑ๐—ถ๐—ฐ๐—ฎ...
16/09/2026

From September 12-18, we celebrate ๐—ก๐—ฒ๐—ผ๐—ป๐—ฎ๐˜๐—ฎ๐—น ๐—ก๐˜‚๐—ฟ๐˜€๐—ฒ๐˜€ ๐—ช๐—ฒ๐—ฒ๐—ธ. ๐Ÿ’›

๐—ก๐—ฒ๐—ผ๐—ป๐—ฎ๐˜๐—ฎ๐—น ๐—ป๐˜‚๐—ฟ๐˜€๐—ฒ๐˜€ ๐—ฐ๐—ฎ๐—ฟ๐—ฒ ๐—ณ๐—ผ๐—ฟ ๐—ฏ๐—ฎ๐—ฏ๐—ถ๐—ฒ๐˜€ ๐—ฑ๐˜‚๐—ฟ๐—ถ๐—ป๐—ด ๐˜€๐—ผ๐—บ๐—ฒ ๐—ผ๐—ณ ๐˜๐—ต๐—ฒ ๐—บ๐—ผ๐˜€๐˜ ๐—บ๐—ฒ๐—ฑ๐—ถ๐—ฐ๐—ฎ๐—น๐—น๐˜† ๐—ฐ๐—ผ๐—บ๐—ฝ๐—น๐—ฒ๐˜… ๐—ฎ๐—ป๐—ฑ ๐˜‚๐—ป๐—ฐ๐—ฒ๐—ฟ๐˜๐—ฎ๐—ถ๐—ป ๐—บ๐—ผ๐—บ๐—ฒ๐—ป๐˜๐˜€ ๐—ฎ๐˜ ๐˜๐—ต๐—ฒ ๐—ฏ๐—ฒ๐—ด๐—ถ๐—ป๐—ป๐—ถ๐—ป๐—ด ๐—ผ๐—ณ ๐—น๐—ถ๐—ณ๐—ฒ. But their role reaches far beyond clinical procedures and monitoring. They are also there for the everyday moments of neonatal care: explaining what is happening, helping parents understand their baby's needs, supporting feeding and skin-to-skin care, noticing small changes, answering questions, and helping families become more confident in caring for their baby. ๐ŸŒฑ

For families after very preterm birth, those interactions can become part of the story they carry with them long after the NICU. Good neonatal care is not only about what can be recorded in a medical chart. ๐—–๐—ผ๐—บ๐—บ๐˜‚๐—ป๐—ถ๐—ฐ๐—ฎ๐˜๐—ถ๐—ผ๐—ป, ๐—ณ๐—ฎ๐—บ๐—ถ๐—น๐˜† ๐—ถ๐—ป๐˜ƒ๐—ผ๐—น๐˜ƒ๐—ฒ๐—บ๐—ฒ๐—ป๐˜, ๐˜๐—ฟ๐˜‚๐˜€๐˜, ๐—ฎ๐—ป๐—ฑ ๐˜€๐˜‚๐—ฝ๐—ฝ๐—ผ๐—ฟ๐˜ can shape how families experience an incredibly demanding time and how they move into the journey that follows discharge. ๐Ÿค

This , we join National Association of Neonatal Nurses (NANN) in recognizing neonatal nurses and the expertise, attention, and care they bring to babies and families every day. โœจ Thank you for everything you do.

๐—ฅ๐—ฒ๐˜€๐—ฒ๐—ฎ๐—ฟ๐—ฐ๐—ต ๐—ฑ๐—ผ๐—ฒ๐˜€ ๐—ป๐—ผ๐˜ ๐—ผ๐—ป๐—น๐˜† ๐—ฎ๐˜€๐—ธ ๐—พ๐˜‚๐—ฒ๐˜€๐˜๐—ถ๐—ผ๐—ป๐˜€ โ€“ ๐—ถ๐˜ ๐—ฎ๐—น๐˜€๐—ผ ๐—ฑ๐—ฒ๐—ฐ๐—ถ๐—ฑ๐—ฒ๐˜€ ๐˜„๐—ต๐—ฎ๐˜ ๐—ฐ๐—ผ๐˜‚๐—ป๐˜๐˜€ ๐—ฎ๐˜€ ๐—ฎ๐—ป ๐—ฎ๐—ป๐˜€๐˜„๐—ฒ๐—ฟ. When a study looks at life after very p...
09/09/2026

๐—ฅ๐—ฒ๐˜€๐—ฒ๐—ฎ๐—ฟ๐—ฐ๐—ต ๐—ฑ๐—ผ๐—ฒ๐˜€ ๐—ป๐—ผ๐˜ ๐—ผ๐—ป๐—น๐˜† ๐—ฎ๐˜€๐—ธ ๐—พ๐˜‚๐—ฒ๐˜€๐˜๐—ถ๐—ผ๐—ป๐˜€ โ€“ ๐—ถ๐˜ ๐—ฎ๐—น๐˜€๐—ผ ๐—ฑ๐—ฒ๐—ฐ๐—ถ๐—ฑ๐—ฒ๐˜€ ๐˜„๐—ต๐—ฎ๐˜ ๐—ฐ๐—ผ๐˜‚๐—ป๐˜๐˜€ ๐—ฎ๐˜€ ๐—ฎ๐—ป ๐—ฎ๐—ป๐˜€๐˜„๐—ฒ๐—ฟ. When a study looks at life after very preterm birth, the outcomes it chooses to measure can shape the whole picture it creates. Some outcomes become easier to see, compare, and discuss. Others may remain less visible, even if they matter deeply in daily life. ๐ŸŒฑ

Clinical outcomes are essential. Survival, complications, lung health, growth, development, hospital stays, and follow-up results all help researchers understand important parts of health after very preterm birth. But they are not the whole story.

Families and people born preterm may also ask different questions: What support is needed over time? How does a child participate at school or in daily life? What affects emotional wellbeing? What helps a family manage follow-up? What makes care easier to access or harder? ๐Ÿงฉ

If those questions are not reflected in research outcomes, they can be easier to overlook.
That is why ๐—ฝ๐—ฒ๐—ผ๐—ฝ๐—น๐—ฒ ๐—ฏ๐—ผ๐—ฟ๐—ป ๐—ฝ๐—ฟ๐—ฒ๐˜๐—ฒ๐—ฟ๐—บ ๐—ฎ๐—ป๐—ฑ ๐˜๐—ต๐—ฒ๐—ถ๐—ฟ ๐—ณ๐—ฎ๐—บ๐—ถ๐—น๐—ถ๐—ฒ๐˜€ ๐—ป๐—ฒ๐—ฒ๐—ฑ ๐—ฎ ๐˜ƒ๐—ผ๐—ถ๐—ฐ๐—ฒ ๐—ถ๐—ป ๐—ฐ๐—ผ๐—ป๐˜ƒ๐—ฒ๐—ฟ๐˜€๐—ฎ๐˜๐—ถ๐—ผ๐—ป๐˜€ ๐—ฎ๐—ฏ๐—ผ๐˜‚๐˜ ๐˜„๐—ต๐—ถ๐—ฐ๐—ต ๐—ผ๐˜‚๐˜๐—ฐ๐—ผ๐—บ๐—ฒ๐˜€ ๐—บ๐—ฎ๐˜๐˜๐—ฒ๐—ฟ. Not as an add-on, but as part of how research defines what it is trying to understand. ๐Ÿ’ฌ ๐—ช๐—ต๐—ฒ๐—ป ๐—ฟ๐—ฒ๐˜€๐—ฒ๐—ฎ๐—ฟ๐—ฐ๐—ต ๐—ฑ๐—ฒ๐—ฐ๐—ถ๐—ฑ๐—ฒ๐˜€ ๐˜„๐—ต๐—ฎ๐˜ ๐—ฐ๐—ผ๐˜‚๐—ป๐˜๐˜€ ๐—ฎ๐˜€ ๐—ฎ๐—ป ๐—ฎ๐—ป๐˜€๐˜„๐—ฒ๐—ฟ, ๐˜๐—ต๐—ฒ ๐—ฝ๐—ฒ๐—ผ๐—ฝ๐—น๐—ฒ ๐—น๐—ถ๐˜ƒ๐—ถ๐—ป๐—ด ๐˜„๐—ถ๐˜๐—ต ๐˜๐—ต๐—ผ๐˜€๐—ฒ ๐—ฎ๐—ป๐˜€๐˜„๐—ฒ๐—ฟ๐˜€ ๐˜€๐—ต๐—ผ๐˜‚๐—น๐—ฑ ๐—ต๐—ฒ๐—น๐—ฝ ๐˜€๐—ต๐—ฎ๐—ฝ๐—ฒ ๐˜๐—ต๐—ฒ ๐—พ๐˜‚๐—ฒ๐˜€๐˜๐—ถ๐—ผ๐—ป. โœจ

๐—ข๐˜‚๐˜๐—ฐ๐—ผ๐—บ๐—ฒ๐˜€ ๐—ฑ๐—ผ ๐—ป๐—ผ๐˜ ๐—ต๐—ฎ๐—ฝ๐—ฝ๐—ฒ๐—ป ๐—ถ๐—ป ๐—ฎ ๐˜ƒ๐—ฎ๐—ฐ๐˜‚๐˜‚๐—บ. A diagnosis, follow-up recommendation, or clinical description may look clear on pap...
02/09/2026

๐—ข๐˜‚๐˜๐—ฐ๐—ผ๐—บ๐—ฒ๐˜€ ๐—ฑ๐—ผ ๐—ป๐—ผ๐˜ ๐—ต๐—ฎ๐—ฝ๐—ฝ๐—ฒ๐—ป ๐—ถ๐—ป ๐—ฎ ๐˜ƒ๐—ฎ๐—ฐ๐˜‚๐˜‚๐—บ. A diagnosis, follow-up recommendation, or clinical description may look clear on paper. But what it means in daily life can depend a lot on the ๐˜€๐˜‚๐—ฝ๐—ฝ๐—ผ๐—ฟ๐˜, ๐˜๐—ถ๐—บ๐—ฒ, ๐—ฎ๐—ฐ๐—ฐ๐—ฒ๐˜€๐˜€, ๐—ฎ๐—ป๐—ฑ ๐—ฟ๐—ฒ๐˜€๐—ผ๐˜‚๐—ฟ๐—ฐ๐—ฒ๐˜€ ๐—ฎ๐—ฟ๐—ผ๐˜‚๐—ป๐—ฑ ๐—ฎ ๐—ณ๐—ฎ๐—บ๐—ถ๐—น๐˜†. ๐ŸŒฑ

For example, two children may receive a similar recommendation for therapy or developmental follow-up. For one family, regular appointments may be easier to manage because they have flexible work hours, reliable transport, nearby services, paid time off, or help with siblings.

For another family, the same recommendation may mean rearranging work shifts, traveling long distances, finding childcare, navigating language barriers, or trying to understand a system that is hard to access. Even when healthcare itself is covered, care still takes time, energy, planning, and knowledge. ๐Ÿงฉ That is why ๐˜๐—ต๐—ฒ ๐˜€๐—ฎ๐—บ๐—ฒ ๐—ผ๐˜‚๐˜๐—ฐ๐—ผ๐—บ๐—ฒ ๐—ฐ๐—ฎ๐—ป ๐—บ๐—ฒ๐—ฎ๐—ป ๐—ฑ๐—ถ๐—ณ๐—ณ๐—ฒ๐—ฟ๐—ฒ๐—ป๐˜ ๐˜๐—ต๐—ถ๐—ป๐—ด๐˜€ ๐—ถ๐—ป ๐—ฟ๐—ฒ๐—ฎ๐—น ๐—น๐—ถ๐—ณ๐—ฒ.

Clinical descriptions matter. But lived experience helps explain what those descriptions actually mean for families โ€“ in routines, stress, support needs, and everyday decisions. ๐Ÿ’ฌ When research looks at outcomes after very preterm birth, that context matters too. It helps show not only what happened, but what it takes for families and children to live with, manage, and respond to it over time. โœจ

26/08/2026

๐—™๐—ฎ๐—บ๐—ถ๐—น๐˜† ๐—ถ๐—ป๐˜ƒ๐—ผ๐—น๐˜ƒ๐—ฒ๐—บ๐—ฒ๐—ป๐˜ ๐˜€๐—ต๐—ผ๐˜‚๐—น๐—ฑ ๐—ณ๐—ฒ๐—ฒ๐—น ๐—ฟ๐—ฒ๐˜€๐—ฝ๐—ฒ๐—ฐ๐˜๐—ณ๐˜‚๐—น, ๐—ป๐—ผ๐˜ ๐˜€๐˜†๐—บ๐—ฏ๐—ผ๐—น๐—ถ๐—ฐ. ๐Ÿ’› When families and people born preterm contribute to research, they bring much more than an โ€œopinion.โ€ They may bring time, energy, lived experience, memories of care, practical knowledge, and questions they have carried for years.

Sometimes, they may also be asked to share very personal parts of their story, for example medical history, difficult experiences in the NICU, emotional stress, trauma, or psychological challenges they may still be working through. That should never be treated lightly. ๐Ÿค

๐— ๐—ฒ๐—ฎ๐—ป๐—ถ๐—ป๐—ด๐—ณ๐˜‚๐—น ๐—ถ๐—ป๐˜ƒ๐—ผ๐—น๐˜ƒ๐—ฒ๐—บ๐—ฒ๐—ป๐˜ ๐—บ๐—ฒ๐—ฎ๐—ป๐˜€ ๐—ฟ๐—ฒ๐—ฐ๐—ผ๐—ด๐—ป๐—ถ๐˜‡๐—ถ๐—ป๐—ด ๐˜„๐—ต๐—ฎ๐˜ ๐—ฝ๐—ฒ๐—ผ๐—ฝ๐—น๐—ฒ ๐—ฎ๐—ฟ๐—ฒ ๐—ด๐—ถ๐˜ƒ๐—ถ๐—ป๐—ด ๐˜„๐—ต๐—ฒ๐—ป ๐˜๐—ต๐—ฒ๐˜† ๐—ฐ๐—ผ๐—ป๐˜๐—ฟ๐—ถ๐—ฏ๐˜‚๐˜๐—ฒ. It means clear expectations before a meeting or workshop. It means accessible information, enough time to prepare, and no pressure to share more than someone chooses. It means respecting that one parent, family, or person born preterm cannot speak for everyone. And it means following up so people know how their input was used. ๐ŸŒฑ

Families can offer powerful insight without having to expose every painful part of their story. That is why ๐—ฟ๐—ฒ๐˜€๐—ฝ๐—ฒ๐—ฐ๐˜๐—ณ๐˜‚๐—น ๐—ถ๐—ป๐˜ƒ๐—ผ๐—น๐˜ƒ๐—ฒ๐—บ๐—ฒ๐—ป๐˜ matters. Family voices should not be included only to show that families were present. They should be invited in ways that value peopleโ€™s time, knowledge, boundaries, and lived experience โ€“ and allow their input to shape the work. โœจ

๐— ๐—ฒ๐—ฎ๐—ป๐—ถ๐—ป๐—ด๐—ณ๐˜‚๐—น ๐—ณ๐—ฎ๐—บ๐—ถ๐—น๐˜† ๐—ถ๐—ป๐˜ƒ๐—ผ๐—น๐˜ƒ๐—ฒ๐—บ๐—ฒ๐—ป๐˜ does not happen by accident. It has to be ๐—ฏ๐˜‚๐—ถ๐—น๐˜ ๐—ถ๐—ป๐˜๐—ผ ๐˜๐—ต๐—ฒ ๐—ฝ๐—ฟ๐—ผ๐—ท๐—ฒ๐—ฐ๐˜ ๐˜€๐˜๐—ฟ๐˜‚๐—ฐ๐˜๐˜‚๐—ฟ๐—ฒ structure from ...
19/08/2026

๐— ๐—ฒ๐—ฎ๐—ป๐—ถ๐—ป๐—ด๐—ณ๐˜‚๐—น ๐—ณ๐—ฎ๐—บ๐—ถ๐—น๐˜† ๐—ถ๐—ป๐˜ƒ๐—ผ๐—น๐˜ƒ๐—ฒ๐—บ๐—ฒ๐—ป๐˜ does not happen by accident. It has to be ๐—ฏ๐˜‚๐—ถ๐—น๐˜ ๐—ถ๐—ป๐˜๐—ผ ๐˜๐—ต๐—ฒ ๐—ฝ๐—ฟ๐—ผ๐—ท๐—ฒ๐—ฐ๐˜ ๐˜€๐˜๐—ฟ๐˜‚๐—ฐ๐˜๐˜‚๐—ฟ๐—ฒ structure from the start. ๐Ÿ’›

In IMPROVE PRETERM, parent and patient voices are structurally woven into the project through ๐˜๐—ต๐—ฒ ๐—ฃ๐—ฎ๐—ฟ๐—ฒ๐—ป๐˜ ๐—ฎ๐—ป๐—ฑ ๐—ฃ๐—ฎ๐˜๐—ถ๐—ฒ๐—ป๐˜ ๐—”๐—ฑ๐˜ƒ๐—ถ๐˜€๐—ผ๐—ฟ๐˜† ๐—•๐—ผ๐—ฎ๐—ฟ๐—ฑ, the PPAB. The PPAB brings together parents of children born preterm and people born preterm themselves. Their role is not only to be informed about the project from the sidelines. They are involved in the work ๐—ฎ๐˜€ ๐—ฎ๐—ฐ๐˜๐—ถ๐˜ƒ๐—ฒ ๐—ฐ๐—ผ๐—ป๐˜๐—ฟ๐—ถ๐—ฏ๐˜‚๐˜๐—ผ๐—ฟ๐˜€. ๐ŸŒฑ

That can mean joining project meetings, taking part in workshops, commenting on communication materials, giving feedback on tools such as questionnaires, or helping researchers reflect on which outcomes should not be overlooked.

For example, PPAB members have already contributed to discussions on ๐—–๐—ผ๐—ฟ๐—ฒ ๐—ข๐˜‚๐˜๐—ฐ๐—ผ๐—บ๐—ฒ ๐—ฆ๐—ฒ๐˜๐˜€ โ€“ shared sets of outcomes that help define what research should measure. Their perspectives can help make sure those discussions stay connected to what matters in everyday life, long-term follow-up, and the experiences of families and people born very preterm. ๐Ÿ’ฌ

This is one way IMPROVE PRETERM works to make family involvement meaningful: not as a single moment of feedback, but as ๐—ฝ๐—ฎ๐—ฟ๐˜ ๐—ผ๐—ณ ๐˜๐—ต๐—ฒ ๐—ฝ๐—ฟ๐—ผ๐—ท๐—ฒ๐—ฐ๐˜ ๐—ฝ๐—ฟ๐—ผ๐—ฐ๐—ฒ๐˜€๐˜€ ๐—ผ๐˜ƒ๐—ฒ๐—ฟ ๐˜๐—ถ๐—บ๐—ฒ. โœจ

Learn more on our website: https://improve-preterm.eu/who-we-are/ppab/

๐— ๐—ฒ๐—ฎ๐—ป๐—ถ๐—ป๐—ด๐—ณ๐˜‚๐—น ๐—ถ๐—ป๐˜ƒ๐—ผ๐—น๐˜ƒ๐—ฒ๐—บ๐—ฒ๐—ป๐˜ ๐—ถ๐˜€ ๐—ฑ๐—ฒ๐˜€๐—ถ๐—ด๐—ป๐—ฒ๐—ฑ, ๐—ป๐—ผ๐˜ ๐—ฎ๐˜€๐˜€๐˜‚๐—บ๐—ฒ๐—ฑ. ๐Ÿ’› Most people would agree that family perspectives should be part of re...
12/08/2026

๐— ๐—ฒ๐—ฎ๐—ป๐—ถ๐—ป๐—ด๐—ณ๐˜‚๐—น ๐—ถ๐—ป๐˜ƒ๐—ผ๐—น๐˜ƒ๐—ฒ๐—บ๐—ฒ๐—ป๐˜ ๐—ถ๐˜€ ๐—ฑ๐—ฒ๐˜€๐—ถ๐—ด๐—ป๐—ฒ๐—ฑ, ๐—ป๐—ผ๐˜ ๐—ฎ๐˜€๐˜€๐˜‚๐—บ๐—ฒ๐—ฑ. ๐Ÿ’› Most people would agree that family perspectives should be part of research into life after very preterm birth. But meaningful involvement does not happen automatically just because families are invited into a meeting, asked to review a document, or included in a project structure. ๐—œ๐˜ ๐—ต๐—ฎ๐˜€ ๐˜๐—ผ ๐—ฏ๐—ฒ ๐—ฏ๐˜‚๐—ถ๐—น๐˜ ๐—ถ๐—ป๐˜๐—ผ ๐˜๐—ต๐—ฒ ๐˜„๐—ผ๐—ฟ๐—ธ ๐—ณ๐—ฟ๐—ผ๐—บ ๐˜๐—ต๐—ฒ ๐˜€๐˜๐—ฎ๐—ฟ๐˜. ๐ŸŒฑ

That means families need ๐—ฐ๐—น๐—ฒ๐—ฎ๐—ฟ ๐—ถ๐—ป๐—ณ๐—ผ๐—ฟ๐—บ๐—ฎ๐˜๐—ถ๐—ผ๐—ป about what they are being asked to contribute to, for example a research question, a questionnaire, an outcome list, a communication text, or a follow-up tool. It also means they need enough ๐˜๐—ถ๐—บ๐—ฒ, ๐—ฎ๐—ฐ๐—ฐ๐—ฒ๐˜€๐˜€๐—ถ๐—ฏ๐—น๐—ฒ ๐—น๐—ฎ๐—ป๐—ด๐˜‚๐—ฎ๐—ด๐—ฒ, ๐—ฎ๐—ป๐—ฑ ๐—ฟ๐—ฒ๐—ฎ๐—น ๐—ผ๐—ฝ๐—ฝ๐—ผ๐—ฟ๐˜๐˜‚๐—ป๐—ถ๐˜๐—ถ๐—ฒ๐˜€ to shape the work before decisions are already made. Family input is most meaningful when it can still ๐—ถ๐—ป๐—ณ๐—น๐˜‚๐—ฒ๐—ป๐—ฐ๐—ฒ ๐˜„๐—ต๐—ฎ๐˜ ๐—ต๐—ฎ๐—ฝ๐—ฝ๐—ฒ๐—ป๐˜€ ๐—ป๐—ฒ๐˜…๐˜. ๐Ÿ’ฌ

And just as important: researchers need to circle back. What changed because of family feedback? What could not be changed, and why? What still needs more discussion? That ๐—ณ๐—ฒ๐—ฒ๐—ฑ๐—ฏ๐—ฎ๐—ฐ๐—ธ ๐—น๐—ผ๐—ผ๐—ฝ helps make family involvement a ๐—ฐ๐—ผ๐—ป๐˜ƒ๐—ฒ๐—ฟ๐˜€๐—ฎ๐˜๐—ถ๐—ผ๐—ป โ€“ not a one-time request for input. ๐Ÿงฉ

When family perspectives are woven into the structure of a project from the beginning, they can help research ask better questions, develop more useful tools, and stay connected to what matters in everyday life. โœจ

๐—•๐—ฒ๐—ถ๐—ป๐—ด ๐—ฎ๐˜€๐—ธ๐—ฒ๐—ฑ ๐—ฎ๐—ป๐—ฑ ๐—ฏ๐—ฒ๐—ถ๐—ป๐—ด ๐—บ๐—ฒ๐—ฎ๐—ป๐—ถ๐—ป๐—ด๐—ณ๐˜‚๐—น๐—น๐˜† ๐—ถ๐—ป๐—ฐ๐—น๐˜‚๐—ฑ๐—ฒ๐—ฑ ๐—ฎ๐—ฟ๐—ฒ ๐—ป๐—ผ๐˜ ๐˜๐—ต๐—ฒ ๐˜€๐—ฎ๐—บ๐—ฒ ๐˜๐—ต๐—ถ๐—ป๐—ด! Families may be invited to contribute in many ways: ...
05/08/2026

๐—•๐—ฒ๐—ถ๐—ป๐—ด ๐—ฎ๐˜€๐—ธ๐—ฒ๐—ฑ ๐—ฎ๐—ป๐—ฑ ๐—ฏ๐—ฒ๐—ถ๐—ป๐—ด ๐—บ๐—ฒ๐—ฎ๐—ป๐—ถ๐—ป๐—ด๐—ณ๐˜‚๐—น๐—น๐˜† ๐—ถ๐—ป๐—ฐ๐—น๐˜‚๐—ฑ๐—ฒ๐—ฑ ๐—ฎ๐—ฟ๐—ฒ ๐—ป๐—ผ๐˜ ๐˜๐—ต๐—ฒ ๐˜€๐—ฎ๐—บ๐—ฒ ๐˜๐—ต๐—ถ๐—ป๐—ด! Families may be invited to contribute in many ways: by joining an advisory board, commenting on a questionnaire, sharing what follow-up feels like, reviewing information materials, joining a meeting, or explaining which outcomes matter in daily life. All of that can be valuable. ๐ŸŒฑ

But ๐—บ๐—ฒ๐—ฎ๐—ป๐—ถ๐—ป๐—ด๐—ณ๐˜‚๐—น ๐—ถ๐—ป๐˜ƒ๐—ผ๐—น๐˜ƒ๐—ฒ๐—บ๐—ฒ๐—ป๐˜ is not just a one-way request for input. It becomes meaningful when that input is part of an ๐—ผ๐—ป๐—ด๐—ผ๐—ถ๐—ป๐—ด ๐—ฐ๐—ผ๐—ป๐˜ƒ๐—ฒ๐—ฟ๐˜€๐—ฎ๐˜๐—ถ๐—ผ๐—ป: when researchers listen, work with what families have shared, come back with what they understood, and discuss what should happen next. ๐Ÿ’ฌ

For example, family feedback might help make a questionnaire easier to understand, show that a research outcome is too narrow, highlight questions families are still missing answers to, or change how project information is explained. It can also help researchers notice when something that looks simple on paper may feel complicated in everyday care. ๐Ÿงฉ

๐—œ๐—ป ๐˜€๐—ต๐—ผ๐—ฟ๐˜, ๐—ณ๐—ฎ๐—บ๐—ถ๐—น๐˜† ๐—ถ๐—ป๐˜ƒ๐—ผ๐—น๐˜ƒ๐—ฒ๐—บ๐—ฒ๐—ป๐˜ ๐—ฏ๐—ฒ๐—ฐ๐—ผ๐—บ๐—ฒ๐˜€ ๐—บ๐—ฒ๐—ฎ๐—ป๐—ถ๐—ป๐—ด๐—ณ๐˜‚๐—น ๐˜„๐—ต๐—ฒ๐—ป ๐—ถ๐˜ ๐—ถ๐˜€ ๐—ป๐—ผ๐˜ ๐—ฎ ๐—ผ๐—ป๐—ฒ-๐˜„๐—ฎ๐˜† ๐—ฟ๐—ฒ๐—พ๐˜‚๐—ฒ๐˜€๐˜ ๐—ณ๐—ผ๐—ฟ ๐—ถ๐—ป๐—ฝ๐˜‚๐˜, ๐—ฏ๐˜‚๐˜ ๐—ฎ๐—ป ๐—ผ๐—ป๐—ด๐—ผ๐—ถ๐—ป๐—ด ๐—ฐ๐—ผ๐—ป๐˜ƒ๐—ฒ๐—ฟ๐˜€๐—ฎ๐˜๐—ถ๐—ผ๐—ป ๐˜๐—ต๐—ฎ๐˜ ๐˜€๐—ต๐—ฎ๐—ฝ๐—ฒ๐˜€ ๐˜„๐—ต๐—ฎ๐˜ ๐—ต๐—ฎ๐—ฝ๐—ฝ๐—ฒ๐—ป๐˜€ ๐—ป๐—ฒ๐˜…๐˜. That kind of conversation takes time, trust, and follow-up. And it is one way research can stay closer to the lives it hopes to support. ๐Ÿคโœจ

Adresse

Munich

Benachrichtigungen

Erfahren Sie als Erste/r von Neuigkeiten und Aktionen: Wir schicken Ihnen eine E-Mail, wenn Improve Preterm etwas verรถffentlicht. Ihre E-Mail-Adresse wird fรผr keinen anderen Zweck verwendet, und Sie kรถnnen sich jederzeit abmelden.

Verknรผpfungen

Teilen