International Congenital Lung Malformations Registry (ICLMR)

Research summary

Congenital lung malformations are a group of related pulmonary lesions now often detected on routine antenatal ultrasound scan. They occur in approximately 1 in 300 babies. A small proportion of babies develop symptoms in the first few weeks of life and require surgery. However, the vast majority remain without symptoms into infancy. Some surgeons advocate planned lung resection in the first year of life in order to avoid problems such as chest infection, or even to avoid a possible tiny risk of later malignancy. There are risks associated with surgery. Other surgeons opt to observe patients with these lesions and only operate if symptoms develop. In order to better understand how to treat these patients, we are proposing an international registry involving approximately 20 centres worldwide, so that the natural history can be followed. All patients with a CLM diagnosed on antenatal scans would be eligible. We will collect data on how patients are currently treated only, this study does not involve any change in intervention. Data will be stored on participating patients for 20 years by a secure data company based in the Netherlands. Only by storing and analysing data long-term can we fully understand how to treat infants born with these abnormalities.

Principal Investigator

Miss Kokila K Lakhoo

Contact us

Email: childrensresearch@ouh.nhs.uk

IRAS number

215924