Short summary

TRALULALA is a major project aiming to map lung disease in children born with tracheomalacia (TM). The study population consists of children born with esophageal atresia, as > 80% of them are also affected by TM. The project aims to encapsulate TM-related lung disease retrospectively in a registry study from 1998-2018, as well as prospectively in a cross-sectional and cohort study. The studies are guided by a steering committee, which evaluates results from the registry study and questionnairres

Rationale

Tracheomalacia (TM) is a unique lung disease resulting from a congenital malformation of the large airway cartilage, causing flaccidity of the trachea. This malformation often coexists with esophageal atresia (EA), affecting approximately 1 in 2500 newborns, with around 250 children aged 0-18 years in Denmark affected. Children with EA often experience feeding difficulties and compromised well-being due to dysphagia and reflux, leading to serious lung issues such as frequent pneumonia, asthma-like symptoms, lung destruction, and exercise-induced breathing difficulties [3-10]. Research suggests that these lung problems commence in infancy and persist into adulthood [11], contrary to earlier beliefs that they diminish during childhood. Improved surgical techniques and neonatal care have increased the survival rate after EA surgery to approximately 95% [4], highlighting the importance of focusing on the long-term consequences, particularly tracheomalacia-related ones, of EA. Hence, there are multiple challenges in effectively assisting this patient group. Through this study, we aim to gain insight into the extent of lung disease both retrospectively and prospectively.

Description of the cohort

The corhort includes all Danish patients diagnosed with esophageal atresia ind the period 1998-2018.

Data and biological material

Data from this group will consists of hospital admissions, medication, education etc. No biological samples will be taken in the registry study,

Collaborating researchers and departments

Department of Pediatrics, OUH

Department of Pediatrics, Rigshispotalet