International Congenital Lung Malformations Registry
Research type
Research Database
IRAS ID
215924
Contact name
Nigel Hall
Contact email
Research summary
International Congenital Lung Malformations Registry
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
19/NE/0372
Date of REC Opinion
25 Mar 2020
REC opinion
Further Information Favourable Opinion
Data collection arrangements
We will be collecting data from mothers who are pregnant with a baby that has been found to have an abnormality in its lung and subsequently data about that child as (s)he grows up. We collect clinical information about them and the medical care they receive. Because not all children with a lung malformation are detected before birth we will also include any child who is found to have a lung abnormality after birth.
We will collected data during routine clinical care at hospitals in the UK
Research programme
We are a group of children's doctors and researchers interested in understanding more about the natural history of these lung abnormalities and how best to treat these children. We want to better understand how the lung abnormality affects people and understand which treatments are best. Because these are rare conditions we wish to collect data on a large number of individuals from many different centres.
Research database title
International Congenital Lung Malformations Registry
Establishment organisation
University of Southampton
Establishment organisation address
Faculty of Medicine
University of Southampton
Southampton
SO16 6YD