Newsroom
RSNN Expert Meeting Report - Minimal Dataset for Non-Small Cell Lung Cancer (NSCLC) Registry
The RSNN Expert Meeting on the topic of a minimal dataset for Non-Small Cell Lung Cancer (NSCLC) registry took place on 25 September 2024. The aim of the meeting was to gather input on the concept NSCLC minimal dataset. 15 experts representing various backgrounds such as regulators, HTA experts and patient representatives attended the meeting.
All participants of the meeting received a draft version of the minimal dataset in advance. This initial dataset was developed through a literature review of existing datasets and input from a subsequently held Expert Meeting in December 2023.
The following questions were discussed:
- What type of questions need to be addressed with this dataset?
- Review of the concept NSCLC minimal dataset:
- Which variables are missing?
- Which variables can be left out?
During the discussions, several shared views on the value and challenges regarding registry RWD (Real-world Data) and needed revisions of the concept NSCLC were identified. As a conclusion to the meeting, next steps to define a feasible NSCLC minimal dataset for Registry RWD were determined.
The full report of the meeting is now available for download here.