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The University of Southampton
Medicine

Research project:  International Congenital Lung Malformation Registry

Currently Active: 
Yes

The International Congenital Lung Malformation Registry will be an online registry of clinical cases of infants born with a congenital lung malfromation. The management of infants born with a congenital lung malformation is currently controversial, particularly for those who remain asymptomatic.

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Existing data that are used to guide treatment decisions are based mainly on relatively small retrospective series. We anticipate that by assimilating a large number of cases prospectively we will be in a position to better understand the natural history of this condition and address some of the treatment controversies debated by clinicians worldwide.
We are currently inviting collaborators to contribute to the registry and for regional representatives to join a steering committee to guide the development of the minimum dataset.

To register your interest in this project, or to receive further information, please click here.

We are also in the process of developing our online data collection tool. In the future this website will be used for data-entry to a secure, online database.

The ICLMR has received start-up funding from the Newlife Foundation. It is run from the University of Southampton and Southampton Children's Hospital, UK.

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