Management of database: European Society of Thoracic Surgeons mesothelioma database-difficulties in improving quality data for rare tumour.

Journal of Thoracic Disease 2018 October [Link]

Bille A


Malignant pleural mesothelioma is a rare tumour but very aggressive with a median survival of 6 to 9 months from diagnosis without any treatment, The European Society of Thoracic Surgeons (ESTS) created a dedicated prospective mesothelioma registry to collect data on patients with malignant mesothelioma treated surgically to monitor the quality of surgery performed.
A dedicated separate registry for mesothelioma has been created as satellite database of the main ESTS database. The database was designed with K data service and was put on line on 2015. Data have been imported retrospectively since 1990 until April 2015 and then 180 cases were also collected also prospectively since 2015.
One thousand and nine hundreds and ninety six cases were collected until April 2017. Most of the patients were male (n=1,403). About 25% received trimodality treatment including surgery and many of them were upstaged to pathological stage III and IV. Only 16 (0.8%) patients in the database died as inpatients. Thirty percent to 40% of patients in the registry had missing information regarding clinical and pathological staging and more than 70% of patients do not have complete information on their multimodality treatment.
The ESTS database represents one of the largest mesothelioma database comprehensive of clinical, surgical and follow up data. The main issue with such an detailed database is the completeness of the data entry, which is crucial to better understand the impact of surgery and monitor the quality of surgery offered across the centres.