The ERN-LUNG Undiagnosed Patients Working Group (UDP-WG) aims to develop an Undiagnosed Patients Pathway (UDPP), a structured approach to improve diagnostic processes and the healthcare journey for patients with complex respiratory complaints. For creating such a Pathway, ERN-LUNG established the UDP-WG consisting of clinicians with expertise and experience in rare lung diseases as well as patients and patient representatives.
Throughout 2025, the group conducted a series of co-design workshops to develop the specialized UDPP for respiratory diseases. Across two workstreams — a clinical workstream and a patient workstream — the red flags were defined, and the clinical checklist as well as the patient recommendations were developed. During the design phase of the UDPP, the working group was invited to participate in three online workshops to collaboratively share and validate the key findings from the workstreams and to structure the UDPP workflow.
The ERN-LUNG Undiagnosed Patients-WG was recognized by EURORDIS as a winner of the Patient Partnership Good Practice Challenge for its collaborative efforts between patients, clinicians, and researchers. As part of the award, we have created an interesting webinar which you can find here: Patient Partnership Webinar – ERN Lung UnDiagnosed Patients Working Group (WG)
As of June 2025, the group successfully completed its third workshop, resolving final structural questions. The pathway has now been finalized and will be published in a paper to improve diagnostic journeys within the network.
Please take a first look at our UDPP brochure, which was developed for the ERS Congress 2025 in Amsterdam.
