ERN-LUNG has launched a new Working Group for Undiagnosed Patients. We are grateful that so many dedicated ERN-LUNG members took the time to participate in our first meeting last Wednesday and share their knowledge and interest in the UDP field. It is great to see how many ERN-LUNG members have joined as well as how many have devoted their participation via email. The meeting was a great chance to collect information about the experiences and motivation of our participants and discuss further steps of the WG. Together we identified gaps in the care of Undiagnosed Patients with rare diseases and discussed possible outcomes of our working group. We are looking forward to the next WG meeting and are excited about where this spearheading project will lead us to.
On the 20th of November, we had our second UDP working group meeting. Many thanks to those who participated in our last meeting. We are very happy to announce that the AETSA team joined our meeting and will support this WG with the scientific basis of the diagnostic patient pathway. They will carry out an initial exploratory search to see the available evidence and review the clinical practice guidelines and consensus statements chronologically for extracting recommendations for diagnostic procedures. While AETSA will conduct the review, the rest of the WG will form task forces to extract mandatory prerequisite diagnostic results.
The next meeting is scheduled for the 22nd of January 2024 from 3 pm to 5 pm.
