Ich habe einen Patienten- wie nehme ich Kontakt auf?
- Your hospital must be located in an EU or EEA Member State.
- You (or your patient) address your query to the online Expert Advisory Board (EXABO), a pan-European internet platform developed in the context of ERN-LUNG to answer questions on all aspects of rare respiratory diseases. On EXABO, expert members of ERN-LUNG are grouped according to the rare disease area and country or language zone. Each of these expert groups is led by at least one moderator who assigns each incoming question to an expert to either give the answer to the question or to start a discussion with some or all of the experts before publishing a response.
- If the patient’s problem has not been addressed within the national part of EXABO, any doctor can ask for virtual consultation of ERN-LUNG reference centers via the Clinical Patient Management System (CPMS).
You can either request a CPMS guest user account for a short time period to access the system, in which case you must be willing to invest some time to apply for the account and to upload the patients’ medical information, including any relevant imaging into CPMS in order for their case to be discussed by our panel of experts.
You contact the ERN-LUNG member HCP within your country (if your country does not have an HCP within ERN-LUNG, contact an ERN-LUNG HCP in the nearest country to yours). The HCP contact will decide if the patient will be enrolled in CPMS for further consultation of ERN-LUNG members, or if your query can be answered by the HCP itself.
- CPMS is a platform that will enable a multidisciplinary team to discuss highly specialized patient cases in a secure environment. The resulting advice can then be directly referred back to the patient by their own treating physician. You must be willing to obtain full informed consent from the patient to share their data using the Clinical Patient Management System (CPMS) – you will have to use the CPMS Informed Consent Form (downloadable from the CPMS in all languages). After your patient has been discussed in the CPMS, you will receive an ERN Outcome Report document from our panel of experts with highly specialised advice on diagnosis or treatment of the patient concerned, based upon the latest current available scientific knowledge. You understand that ERN-LUNG can only provide expert highly specialised multi-disciplinary advice – all legal liability and responsibility for the patient rests, as it has always done, with the clinician and healthcare provider treating the patient where the patient lives.