RecruitingOBSERVATIONAL

European Management Platform for Childhood Interstitial Lung Diseases - chILD-EU Register and Biobank

This European study, called chILD-EU, is focused on improving the understanding and care for children with rare lung conditions known as chILD (childhood interstitial lung diseases). Researchers are building a central European database and a collection of samples (biobank) to gather detailed information from affected children across different countries. The study will help create better guidelines for diagnosing and treating chILD, allowing doctors to provide more consistent and effective care. By looking at how treatments are currently given and what the results are, the study hopes to identify the best ways to help children with these complex lung problems. The ultimate goal is to improve the lives of children living with chILD throughout Europe.

At a glance

Status

Recruiting

Sponsor

Matthias Griese

Enrolment target

1,000

Start

01 Dec 2013

Estimated completion

01 Dec 2029

Lung Diseases, Interstitial Pulmonary Alveolar Proteinosis Pulmonary Eosinophilia Pulmonary Fibrosis Respiratory Distress Syndrome, Newborn Child

What is this study about?

This study, called chILD-EU, is all about helping children who have a group of rare lung conditions known as chILD (childhood interstitial lung diseases). These conditions can cause serious breathing difficulties and require careful management. Because chILD is rare, it can be hard for doctors in one country to gather enough information to fully understand the conditions and the best ways to treat them. This study brings together experts from different European countries to work together.

The main idea is to create a shared European online database where information about children with chILD can be stored safely and securely. They are also setting up a 'biobank', which is like a library where biological samples (like blood) can be kept for future research. By collecting lots of information from many children, researchers hope to get a clearer picture of these diseases, how they develop, and how different treatments work.

Ultimately, this study aims to create better guidelines for diagnosing and treating chILD. They will look at different ways doctors assess these conditions, like scans and tests, and also how treatments are given. By comparing what happens to children across Europe, they want to find the most effective and safe ways to care for them. This will help ensure that children with chILD, no matter where they live in Europe, receive the best possible care.

Key takeaways

It's a European study for children with rare lung conditions (chILD).
It aims to create a shared database and tissue bank.
The goal is to improve diagnosis and treatment guidelines.
No new treatments are given; it observes existing care.
Your child's information will be kept confidential.
Participation helps future chILD patients.

Who may be eligible?

This study is looking for children who have, or are thought to have, certain rare lung conditions. These conditions are called Interstitial Lung Diseases (ILD), or other similar rare lung problems that might look like ILD.

This includes conditions like Pulmonary Alveolar Proteinosis (where your lungs fill with a fatty material), Pulmonary Eosinophilia (when certain cells build up in your lungs), Pulmonary Fibrosis (scarring of the lungs), and Respiratory Distress Syndrome in newborns.

If a child has a lung condition that doesn't fit these descriptions, or if their condition is not suspected to be ILD or similar, then they likely wouldn't be able to join this particular study.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Is your child diagnosed with, or suspected of having, a rare lung disease like chILD?
Does your child have conditions such as Pulmonary Alveolar Proteinosis, Pulmonary Eosinophilia, Pulmonary Fibrosis, or Newborn Respiratory Distress Syndrome?
Has a doctor told you that your child's lung condition might be similar to chILD?
Your child does not have a lung condition completely unrelated to chILD or similar rare diseases.

Answer every question to see your result.

What does participation involve?

This study is mainly about collecting information from children who have chILD. If your child is part of this study, their doctors will share details about their diagnosis, treatments, and how they are getting on. This information will come from their regular hospital visits, tests, and scans they would be having anyway as part of their routine care. There are no extra visits or special treatments required just for this study.

Doctors will also be asked to follow some recommended guidelines for how they gather information and follow up with your child, to make sure the information collected is as useful as possible. They will track your child's progress over time to see how the condition changes and how effective different treatments are. Your child will not be given any study medication or experimental interventions, as this is an observational study looking at existing care.

Potential risks and benefits

The main benefit of taking part in this study is contributing to a better understanding of chILD, which could lead to improved diagnosis and treatment for all children with these conditions in the future. As this is an observational study, meaning it only collects information from routine care, there are no direct medical risks from participating beyond those already associated with your child's usual treatment and diagnostic procedures. Your child will not receive any experimental treatments. All information shared will be kept confidential. You are completely free to withdraw your child from the study at any time, without it affecting their medical care.

Locations (3)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Medizinische Hochschule Hannover
Verified postcode
Hanover, Germany· Recruiting
Hacettepe University, Medical Faculty
Verified postcode
Ankara, Turkey (Türkiye)· Recruiting
University of Edinburgh
Verified postcode
Edinburgh, United Kingdom· Recruiting

Common questions

What is chILD?

chILD stands for childhood interstitial lung diseases, which are a group of rare lung conditions affecting children that can make breathing difficult.

Will my child receive new medicine in this study?

No, this study is about collecting information from children's existing medical care, not giving new medicines or treatments.

How will my child's information be kept private?

All information shared will be handled very carefully and kept confidential to protect your child's privacy.

Who is running this study?

This is a European study bringing together expert doctors and researchers from different countries to learn more about chILD.

Can I change my mind about my child being in the study?

Yes, you can decide to withdraw your child from the study at any point, and it will not affect their medical care.

How to find out more

Matthias Griese, Prof.

Matthias.Griese@med.uni-muenchen.de +49/89/440057871 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.