Improve Preterm

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

Sometimes, families are told different things at different moments – and that can be really hard to make sense of. 💛For ...
08/04/2026

Sometimes, families are told different things at different moments – and that can be really hard to make sense of. 💛

For example, one doctor might say a child is doing well and seems to be developing as expected, while later on, a different professional may raise concerns about learning, behavior, or follow-up support. Both conversations can be honest – but 𝗵𝗲𝗮𝗿𝗶𝗻𝗴 𝗱𝗶𝗳𝗳𝗲𝗿𝗲𝗻𝘁 𝗺𝗲𝘀𝘀𝗮𝗴𝗲𝘀 𝗼𝘃𝗲𝗿 𝘁𝗶𝗺𝗲 𝗰𝗮𝗻 𝘀𝘁𝗶𝗹𝗹 𝗳𝗲𝗲𝗹 𝗰𝗼𝗻𝗳𝘂𝘀𝗶𝗻𝗴.

One reason for this is that 𝗵𝗲𝗮𝗹𝘁𝗵 𝗮𝗻𝗱 𝗱𝗲𝘃𝗲𝗹𝗼𝗽𝗺𝗲𝗻𝘁 𝗮𝗳𝘁𝗲𝗿 𝘃𝗲𝗿𝘆 𝗽𝗿𝗲𝘁𝗲𝗿𝗺 𝗯𝗶𝗿𝘁𝗵 𝗱𝗼 𝗻𝗼𝘁 𝗮𝗹𝘄𝗮𝘆𝘀 𝗳𝗼𝗹𝗹𝗼𝘄 𝗮 𝘀𝘁𝗿𝗮𝗶𝗴𝗵𝘁 𝗹𝗶𝗻𝗲. Some questions only become clearer with time, and not every important issue has a simple answer right away. That does not mean families are overthinking things – it means this is an area where 𝗯𝗲𝘁𝘁𝗲𝗿 𝗲𝘃𝗶𝗱𝗲𝗻𝗰𝗲 𝗶𝘀 𝘀𝘁𝗶𝗹𝗹 𝘂𝗿𝗴𝗲𝗻𝘁𝗹𝘆 𝗻𝗲𝗲𝗱𝗲𝗱. 🌱

At IMPROVE PRETERM, we want to help make that bigger picture easier to understand. When answers feel incomplete or change over time, that is often part of a broader system challenge – not something families are imagining. 🤍

01/04/2026

For many children born very preterm, 𝗳𝗮𝗺𝗶𝗹𝗶𝗲𝘀 𝗮𝗿𝗲 𝘁𝗵𝗲 𝗼𝗻𝗲 𝗰𝗼𝗻𝘀𝘁𝗮𝗻𝘁 𝗮𝗰𝗿𝗼𝘀𝘀 𝘁𝗵𝗲𝗶𝗿 𝗰𝗮𝗿𝗲 𝗷𝗼𝘂𝗿𝗻𝗲𝘆.

As children move between stages of care and different healthcare professionals, 𝗳𝗮𝗺𝗶𝗹𝗶𝗲𝘀 often become the ones who 𝗰𝗮𝗿𝗿𝘆 𝘁𝗵𝗲𝗶𝗿 𝗰𝗵𝗶𝗹𝗱’𝘀 𝗵𝗶𝘀𝘁𝗼𝗿𝘆, 𝘀𝗽𝗲𝗮𝗸 𝘂𝗽 𝗳𝗼𝗿 𝘁𝗵𝗲𝗶𝗿 𝗻𝗲𝗲𝗱𝘀, 𝗮𝗻𝗱 𝗸𝗲𝗲𝗽 𝘁𝗵𝗲𝗶𝗿 𝘃𝗼𝗶𝗰𝗲 𝗽𝗿𝗲𝘀𝗲𝗻𝘁 over time.

This role requires 𝘀𝘁𝗿𝗲𝗻𝗴𝘁𝗵, 𝗽𝗲𝗿𝘀𝗶𝘀𝘁𝗲𝗻𝗰𝗲, 𝗮𝗻𝗱 𝗱𝗲𝗲𝗽 𝗰𝗼𝗺𝗺𝗶𝘁𝗺𝗲𝗻𝘁 — often alongside everyday family life.

In IMPROVE PRETERM, family perspectives are valued because they reflect this long-term view. They help research better understand how care unfolds across childhood — and what it takes to navigate it.

Last week, IMPROVE PRETERM brought together researchers and members of its Parent & Patient Advisory Board (PPAB) in Mun...
25/03/2026

Last week, IMPROVE PRETERM brought together researchers and members of its Parent & Patient Advisory Board (PPAB) in Munich for a workshop on Core Outcome Sets.

Together, they explored an important question: What outcomes matter most after very preterm birth – and what should research actually measure?

That matters because life after very preterm birth can bring questions that continue far beyond the hospital. At IMPROVE PRETERM, we want to help families navigate life after very preterm birth by improving lifelong health for babies born too soon – with research that reflects real-life needs and lived experience.

Read the full article here: https://improve-preterm.eu/news/very-preterm-birth-research/ 🔗

𝗧𝗼𝗱𝗮𝘆, 𝗧𝗵𝘂𝗿𝘀𝗱𝗮𝘆, 𝗜𝗠𝗣𝗥𝗢𝗩𝗘 𝗣𝗥𝗘𝗧𝗘𝗥𝗠 𝗶𝘀 𝗵𝗼𝗹𝗱𝗶𝗻𝗴 𝗮 𝘄𝗼𝗿𝗸𝘀𝗵𝗼𝗽 𝗶𝗻 𝗠𝘂𝗻𝗶𝗰𝗵 𝘄𝗶𝘁𝗵 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵𝗲𝗿𝘀 𝗮𝗻𝗱 𝗺𝗲𝗺𝗯𝗲𝗿𝘀 𝗼𝗳 𝗼𝘂𝗿 𝗣𝗮𝗿𝗲𝗻𝘁 & 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗔𝗱...
19/03/2026

𝗧𝗼𝗱𝗮𝘆, 𝗧𝗵𝘂𝗿𝘀𝗱𝗮𝘆, 𝗜𝗠𝗣𝗥𝗢𝗩𝗘 𝗣𝗥𝗘𝗧𝗘𝗥𝗠 𝗶𝘀 𝗵𝗼𝗹𝗱𝗶𝗻𝗴 𝗮 𝘄𝗼𝗿𝗸𝘀𝗵𝗼𝗽 𝗶𝗻 𝗠𝘂𝗻𝗶𝗰𝗵 𝘄𝗶𝘁𝗵 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵𝗲𝗿𝘀 𝗮𝗻𝗱 𝗺𝗲𝗺𝗯𝗲𝗿𝘀 𝗼𝗳 𝗼𝘂𝗿 𝗣𝗮𝗿𝗲𝗻𝘁 & 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗔𝗱𝘃𝗶𝘀𝗼𝗿𝘆 𝗕𝗼𝗮𝗿𝗱 (𝗣𝗣𝗔𝗕).

The focus is on a big but very important question: 𝙒𝙝𝙖𝙩 𝙤𝙪𝙩𝙘𝙤𝙢𝙚𝙨 𝙨𝙝𝙤𝙪𝙡𝙙 𝙧𝙚𝙨𝙚𝙖𝙧𝙘𝙝 𝙢𝙚𝙖𝙨𝙪𝙧𝙚 𝙞𝙛 𝙬𝙚 𝙩𝙧𝙪𝙡𝙮 𝙬𝙖𝙣𝙩 𝙞𝙩 𝙩𝙤 𝙧𝙚𝙛𝙡𝙚𝙘𝙩 𝙡𝙞𝙛𝙚 𝙖𝙛𝙩𝙚𝙧 𝙫𝙚𝙧𝙮 𝙥𝙧𝙚𝙩𝙚𝙧𝙢 𝙗𝙞𝙧𝙩𝙝?

This workshop brings lived experience into the conversation. Parents and adults born preterm are helping researchers think about which outcomes really matter – including parent- and patient-reported outcomes, everyday experiences, and life after discharge.

That matters because better research can lead to better follow-up, better understanding, and better care. And for research to be meaningful, it has to reflect the real needs of children, adults, and families affected by very preterm birth. 💜

At IMPROVE PRETERM, we are working to help families navigate life after very preterm birth by improving lifelong health for babies born too soon – across Europe, over time, and with families at the center.

A big thank you to our PPAB members and the parent organizations helping make this work possible 🤝

Enneaegsed lapsed Prematurforeningen XXS Frühchen Schweiz Bundesverband "Das frühgeborene Kind" e.V. Kevyt-yhdistyksen ystävät Koalicja dla wcześniaka

Many of the gaps families experience don’t come from a lack of care – but from 𝗰𝗮𝗿𝗲 𝘁𝗵𝗮𝘁 𝗶𝘀𝗻’𝘁 𝗰𝗼𝗻𝗻𝗲𝗰𝘁𝗲𝗱 𝗼𝘃𝗲𝗿 𝘁𝗶𝗺𝗲. IMPR...
18/03/2026

Many of the gaps families experience don’t come from a lack of care – but from 𝗰𝗮𝗿𝗲 𝘁𝗵𝗮𝘁 𝗶𝘀𝗻’𝘁 𝗰𝗼𝗻𝗻𝗲𝗰𝘁𝗲𝗱 𝗼𝘃𝗲𝗿 𝘁𝗶𝗺𝗲. IMPROVE PRETERM was created to better understand this reality.

Instead of focusing on a single treatment or moment, 𝘁𝗵𝗲 𝗽𝗿𝗼𝗷𝗲𝗰𝘁 𝘀𝘁𝘂𝗱𝗶𝗲𝘀 𝗿𝗲𝗮𝗹-𝗹𝗶𝗳𝗲 𝗰𝗮𝗿𝗲 𝗮𝗰𝗿𝗼𝘀𝘀 𝗰𝗼𝘂𝗻𝘁𝗿𝗶𝗲𝘀 𝗮𝗻𝗱 𝗮𝗰𝗿𝗼𝘀𝘀 𝗰𝗵𝗶𝗹𝗱𝗵𝗼𝗼𝗱. By learning from different healthcare systems, follow-up approaches, and lived experiences, researchers can 𝘀𝗲𝗲 𝘄𝗵𝗲𝗿𝗲 𝗰𝗮𝗿𝗲 𝗰𝗼𝗻𝗻𝗲𝗰𝘁𝘀 – 𝗮𝗻𝗱 𝘄𝗵𝗲𝗿𝗲 𝗶𝘁 𝗯𝗿𝗲𝗮𝗸𝘀 𝗱𝗼𝘄𝗻.

This 𝗹𝗼𝗻𝗴-𝘁𝗲𝗿𝗺, 𝗿𝗲𝗮𝗹-𝘄𝗼𝗿𝗹𝗱 𝗽𝗲𝗿𝘀𝗽𝗲𝗰𝘁𝗶𝘃𝗲 helps research reflect how care actually works for children born very preterm, not just how it is meant to work on paper.

You can learn more about how IMPROVE PRETERM approaches this work on our website: https://improve-preterm.eu/about/

Research is increasingly recognizing what many families already experience: 𝗪𝗵𝗲𝗻 𝗰𝗮𝗿𝗲 𝗶𝘀 𝗳𝗿𝗮𝗴𝗺𝗲𝗻𝘁𝗲𝗱, 𝗶𝗺𝗽𝗼𝗿𝘁𝗮𝗻𝘁 𝗽𝗮𝗿𝘁𝘀 𝗼𝗳 ...
11/03/2026

Research is increasingly recognizing what many families already experience: 𝗪𝗵𝗲𝗻 𝗰𝗮𝗿𝗲 𝗶𝘀 𝗳𝗿𝗮𝗴𝗺𝗲𝗻𝘁𝗲𝗱, 𝗶𝗺𝗽𝗼𝗿𝘁𝗮𝗻𝘁 𝗽𝗮𝗿𝘁𝘀 𝗼𝗳 𝗮 𝗰𝗵𝗶𝗹𝗱’𝘀 𝗷𝗼𝘂𝗿𝗻𝗲𝘆 𝗰𝗮𝗻 𝗯𝗲 𝗹𝗼𝘀𝘁 – especially when children move between stages, services, or healthcare providers.

To better understand lifelong health after very preterm birth, healthcare systems need to do more than offer individual appointments. They need to 𝗰𝗮𝗽𝘁𝘂𝗿𝗲 𝘁𝗵𝗲 𝘄𝗵𝗼𝗹𝗲 𝗷𝗼𝘂𝗿𝗻𝗲𝘆 – and support communication across time, disciplines, and settings.

Better follow-up isn’t only about more care. It’s about 𝗰𝗼𝗻𝗻𝗲𝗰𝘁𝗲𝗱 𝗰𝗮𝗿𝗲, where information travels with the child, and professionals can build on what came before.

This is a growing focus in research on lifelong health.

Many families discover that 𝗳𝗼𝗹𝗹𝗼𝘄-𝘂𝗽 𝗮𝗳𝘁𝗲𝗿 𝘃𝗲𝗿𝘆 𝗽𝗿𝗲𝘁𝗲𝗿𝗺 𝗯𝗶𝗿𝘁𝗵 𝗹𝗼𝗼𝗸𝘀 𝘃𝗲𝗿𝘆 𝗱𝗶𝗳𝗳𝗲𝗿𝗲𝗻𝘁 depending on where they live, who th...
04/03/2026

Many families discover that 𝗳𝗼𝗹𝗹𝗼𝘄-𝘂𝗽 𝗮𝗳𝘁𝗲𝗿 𝘃𝗲𝗿𝘆 𝗽𝗿𝗲𝘁𝗲𝗿𝗺 𝗯𝗶𝗿𝘁𝗵 𝗹𝗼𝗼𝗸𝘀 𝘃𝗲𝗿𝘆 𝗱𝗶𝗳𝗳𝗲𝗿𝗲𝗻𝘁 depending on where they live, who they see, and which systems they move through.

Over time, this can place an 𝘂𝗻𝗳𝗮𝗶𝗿 𝗯𝘂𝗿𝗱𝗲𝗻 𝗼𝗻 𝗳𝗮𝗺𝗶𝗹𝗶𝗲𝘀 – to remember early medical histories, to explain their child’s journey again and again, and sometimes to push for follow-up or support that isn’t automatically offered.

As children grow older, links to very preterm birth are not always recognized. Medical records may not follow the child, and later care may not take early life into account.

These gaps are not caused by families. They reflect 𝘀𝘆𝘀𝘁𝗲𝗺𝘀 𝘁𝗵𝗮𝘁 𝗮𝗿𝗲 𝗼𝗳𝘁𝗲𝗻 𝗻𝗼𝘁 𝗱𝗲𝘀𝗶𝗴𝗻𝗲𝗱 𝘁𝗼 𝗳𝗼𝗹𝗹𝗼𝘄 𝗮 𝗰𝗵𝗶𝗹𝗱’𝘀 𝗷𝗼𝘂𝗿𝗻𝗲𝘆 𝗮𝗰𝗿𝗼𝘀𝘀 𝘁𝗶𝗺𝗲.

25/02/2026

Families bring perspectives that research alone can’t capture. 𝗟𝗶𝘃𝗲𝗱 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 helps highlight questions that matter in everyday life after very preterm birth – not just what is easiest to measure.

That’s why families are involved in IMPROVE PRETERM. Not to share personal stories publicly – but to help research stay grounded in real experiences over time.

This collaboration helps research ask 𝗯𝗲𝘁𝘁𝗲𝗿, 𝗺𝗼𝗿𝗲 𝗺𝗲𝗮𝗻𝗶𝗻𝗴𝗳𝘂𝗹 𝗾𝘂𝗲𝘀𝘁𝗶𝗼𝗻𝘀 about lifelong health.

After very preterm birth, many 𝗾𝘂𝗲𝘀𝘁𝗶𝗼𝗻𝘀 don’t disappear – they 𝗰𝗵𝗮𝗻𝗴𝗲 𝗼𝘃𝗲𝗿 𝘁𝗶𝗺𝗲.IMPROVE PRETERM focuses on questions th...
18/02/2026

After very preterm birth, many 𝗾𝘂𝗲𝘀𝘁𝗶𝗼𝗻𝘀 don’t disappear – they 𝗰𝗵𝗮𝗻𝗴𝗲 𝗼𝘃𝗲𝗿 𝘁𝗶𝗺𝗲.

IMPROVE PRETERM focuses on questions that matter across childhood and beyond, such as:
– 𝗛𝗼𝘄 𝗵𝗲𝗮𝗹𝘁𝗵 𝗱𝗲𝘃𝗲𝗹𝗼𝗽𝘀 𝗼𝘃𝗲𝗿 𝘁𝗶𝗺𝗲, not just in the early years
– 𝗪𝗵𝗮𝘁 𝘀𝘂𝗽𝗽𝗼𝗿𝘁𝘀 𝘄𝗲𝗹𝗹-𝗯𝗲𝗶𝗻𝗴 as children grow
– 𝗪𝗵𝘆 𝗰𝗮𝗿𝗲 𝗮𝗻𝗱 𝗳𝗼𝗹𝗹𝗼𝘄-𝘂𝗽 𝗰𝗮𝗻 𝗹𝗼𝗼𝗸 𝗱𝗶𝗳𝗳𝗲𝗿𝗲𝗻𝘁 from one place to another

Instead of looking at one moment or one outcome, the project brings together researchers, healthcare professionals, and families to better understand 𝗽𝗮𝘁𝘁𝗲𝗿𝗻𝘀 𝗼𝗳 𝗹𝗶𝗳𝗲𝗹𝗼𝗻𝗴 𝗵𝗲𝗮𝗹𝘁𝗵.

This long-term perspective helps research stay connected to real-life experiences after very preterm birth.

You can learn more about the project on our website: https://improve-preterm.eu/

When we talk about 𝗰𝗵𝗶𝗹𝗱 𝗱𝗲𝘃𝗲𝗹𝗼𝗽𝗺𝗲𝗻𝘁, milestones often get a lot of attention. But for children born very preterm, singl...
11/02/2026

When we talk about 𝗰𝗵𝗶𝗹𝗱 𝗱𝗲𝘃𝗲𝗹𝗼𝗽𝗺𝗲𝗻𝘁, milestones often get a lot of attention. But for children born very preterm, single milestones don’t always tell the full story.

That’s why 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗹𝗼𝗼𝗸𝘀 𝗮𝘁 𝗽𝗮𝘁𝘁𝗲𝗿𝗻𝘀 𝗼𝘃𝗲𝗿 𝘁𝗶𝗺𝗲 – how skills, health, and well-being develop across different stages of childhood. Looking at the 𝗯𝗶𝗴𝗴𝗲𝗿 𝗽𝗶𝗰𝘁𝘂𝗿𝗲 helps researchers understand variation, change, and long-term health more realistically.

This long-term view supports better understanding – even when answers take time.

After very preterm birth, 𝗽𝗿𝗼𝗴𝗿𝗲𝘀𝘀 𝗱𝗼𝗲𝘀𝗻’𝘁 𝗮𝗹𝘄𝗮𝘆𝘀 𝗺𝗼𝘃𝗲 𝗶𝗻 𝗮 𝘀𝘁𝗿𝗮𝗶𝗴𝗵𝘁 𝗹𝗶𝗻𝗲.Many families notice periods of growth followe...
04/02/2026

After very preterm birth, 𝗽𝗿𝗼𝗴𝗿𝗲𝘀𝘀 𝗱𝗼𝗲𝘀𝗻’𝘁 𝗮𝗹𝘄𝗮𝘆𝘀 𝗺𝗼𝘃𝗲 𝗶𝗻 𝗮 𝘀𝘁𝗿𝗮𝗶𝗴𝗵𝘁 𝗹𝗶𝗻𝗲.

Many families notice periods of growth followed by plateaus – or moments when new challenges seem to appear after things felt more stable. This kind of uneven progress is common.

𝗗𝗲𝘃𝗲𝗹𝗼𝗽𝗺𝗲𝗻𝘁 𝗮𝗳𝘁𝗲𝗿 𝘃𝗲𝗿𝘆 𝗽𝗿𝗲𝘁𝗲𝗿𝗺 𝗯𝗶𝗿𝘁𝗵 𝗼𝗳𝘁𝗲𝗻 𝘂𝗻𝗳𝗼𝗹𝗱𝘀 𝗼𝘃𝗲𝗿 𝘁𝗶𝗺𝗲, shaped by many factors that can change as children grow. Understanding this broader context can help explain why 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲𝘀 𝘃𝗮𝗿𝘆 𝘀𝗼 𝗺𝘂𝗰𝗵 𝗳𝗿𝗼𝗺 𝗼𝗻𝗲 𝘀𝘁𝗮𝗴𝗲 𝘁𝗼 𝘁𝗵𝗲 𝗻𝗲𝘅𝘁 – and why questions may come and go.

28/01/2026

Research about very preterm birth doesn’t happen in isolation. 𝗙𝗮𝗺𝗶𝗹𝗶𝗲𝘀 𝗯𝗿𝗶𝗻𝗴 𝗽𝗲𝗿𝘀𝗽𝗲𝗰𝘁𝗶𝘃𝗲𝘀 𝘁𝗵𝗮𝘁 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗮𝗹𝗼𝗻𝗲 𝗰𝗮𝗻’𝘁 𝗰𝗮𝗽𝘁𝘂𝗿𝗲 – everyday realities, long-term questions, and insights shaped by lived experience over time.

That’s why IMPROVE PRETERM involves parents and adults born very preterm in shaping research priorities and tools. Not as subjects – but as 𝗽𝗮𝗿𝘁𝗻𝗲𝗿𝘀.

𝗟𝗶𝘀𝘁𝗲𝗻𝗶𝗻𝗴 𝘁𝗼 𝗳𝗮𝗺𝗶𝗹𝗶𝗲𝘀 helps research focus on what truly matters in daily life after very preterm birth, across childhood and beyond. Family perspectives don’t just add context. They help 𝗴𝘂𝗶𝗱𝗲 𝗯𝗲𝘁𝘁𝗲𝗿 𝘂𝗻𝗱𝗲𝗿𝘀𝘁𝗮𝗻𝗱𝗶𝗻𝗴 – 𝗮𝗻𝗱 𝗯𝗲𝘁𝘁𝗲𝗿 𝗰𝗮𝗿𝗲.



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