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Protocol and Guidelines for Point-of-Care Lung Ultrasound in Diagnosing Neonatal Pulmonary Diseases Based on International Expert Consensus
Published on: March 6, 2019
[Kids Lung Registry and Child-EU Project - Progress in Rare and Interstitial Lung Diseases in Childhood Through
Matthias Griese1, Angelika Gold1, Florian Gothe1
1Dr. von Haunersches Kinderspital, Klinikum der Universität München, Deutsches Zentrum für Lungenforschung (DZL), München, Germany.
Insights
Participating in the pediatric lung registry (chILD-EU) aids rare lung disease research. This systematic data collection and expert review improve understanding and care for affected children.
Area of Science:
- Pediatric Pulmonology
- Rare Diseases
- Medical Registries
Context:
- Rare and interstitial lung diseases in children require systematic data collection for progress.
- The pediatric lung registry (chILD-EU) project aims to address this need.
- Clinical experiences with the registry are reported.
Purpose:
- To outline the practicalities and benefits of participating in the pediatric lung registry.
- To demonstrate how systematic data collection facilitates research in pediatric rare lung diseases.
Summary:
- Children with rare lung diseases are identified by pediatricians and referred to the Kid's Lung Register with parental consent.
- Clinical data, imaging, and biological samples are collected, with optional genetic analysis.
- An interdisciplinary review process establishes diagnoses, with ongoing data collection, annual follow-ups, and web-based case discussions.
Impact:
- Over 1000 children with rare lung diseases have been enrolled in the registry and biobank.
- The registry facilitates a deeper understanding of clinical trajectories in rare lung disease cohorts.
- This contributes to the description of new disease entities and improved patient care.
Background:
Progress in rare and interstitial lung disease in childhood can most usefully be achieved through systematic, registry-based collection.
Question And Methods:
What are the practicalities and benefits of participating in the pediatric lung registry/chILD-EU project? We report our clinical experiences.
Results:
Pediatricians and pediatric pulmonologists identify children with rare lung diseases. These are reported to the Kid's Lung Register after parental consent. Clinical data, imaging, and blood are sent to the registry. Genetic analysis can be arranged if desired. With completeness of the data, a peer-review process by pediatric radiology, possibly lung pathology, clinical and possibly genetic experts takes place in an interdisciplinary conference. A working diagnosis is established and communicated to the responsible physician via the registry and, if necessary, further discussed in case-related discussions. Assistance in entering the data is provided by the registry. Follow-ups are performed annually, and all registered physicians are invited to regular, web-based case discussions. Significant questions are answered in scientific projects and jointly published (>110 publications to date).
Conclusions:
Due to voluntary additional work of all participants beyond clinical routine, more than 1000 children with rare lung diseases have been included in the registry with biobank to date. A deeper understanding of the clinical courses of large cohorts of rare diseases and the initial description of new entities contributes to better care for these children.
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