Quite something is happening within the UDP WG, our clinical task forces are working on the prerequisite diagnostic procedures for CF, PH, PCD, ILD within the fields of history taking, imaging, pulmonary function testing, hemodynamics, genetic diagnostics, pathology, and lab results/other diagnostic prerequisites. We are proud that so many experts are committed to supporting this project and eagerly work together to identify the most important diagnostic procedures that an undiagnosed patient should have undergone remaining undiagnosed, before he or she gets referred to ERN-LUNG.
On the 27th we held our 4th UnDiagnosed Patients Working Group Meeting, where preliminary results were presented in both the clinical task force and the patient work stream. Most of our clinical task force groups presented their results, opening the room for discussion. We concluded that a written consent on the preliminary diagnostic procedures is indispensable within the working group. The next step will be for the clinical task force leads to gather changes within their TF groups and then we will start a written consent process to validate and add to the diagnostic procedures and prerequisites.
In our patient workstream, already two patient workshops were held. Experiences on the undiagnosed and misdiagnosed patient pathway were gathered directly from the patients who shared valuable insights. The analysis of these insights is still ongoing. The first results were also presented during the meeting and were very promising to add on to the clinical results and complete the undiagnosed patient pathway.
We believe that it is important to combine the patient perspective with science and are very proud to be stepping forward in this matter through our UnDiagnosed Patients Working Group.
