CPMS

Clinical Patient Management System (CPMS)

The Clinical Patient Management System (CPMS) is a secure web-based application to support European Reference Networks in the diagnosis and treatment of rare or low prevalence complex diseases across national borders. The ERN Experts (from one or more ERNs) will gather in multidisciplinary panels and use CPMS to carry out e-consultations of rare and complex cases. There is one defined use case for each of the 6 Disease Groups within ERN-RND. Guest experts from centres that are not part of the ERN can also be invited to the panel.

Panels are composed of experts with complementary expertise, which is essential for solving complex cases in the field of rare diseases and providing the best possible healthcare.

The ERN-RND is currently rolling-out the use of the CPMS. The ERN experts are getting familiar with the various functionalities of CPMS such as enrolling patients, using the different possible data sets in order to describe the patient comprehensively and present him/her to the other panel members in order to receive advice on diagnosis or treatment.

To find out more about the thinking behind the platform and how we expect it to work and be used, the European Commission has produced this short video.

Using the CPMS

In order to use the CPMS you have to have an EU login and subsequently register to CPMS.

Registration to CPMS
To register to CPMS, please follow the registration guide.

Login CPMS
To login into CPMS, please click here.

User guide
Please check the User guide to help you use the CPMS.

Patient consents and data protection
Patients need to consent to the consultation of her/his case on CPMS.

The EU data protection officer has approved the CPMS. You can find the respective approval here.

To join a panel directly please look here if you are a Panel Lead or a Panel Member.
To join a scheduled CPMS meeting please look here.

Helpdesk and training
If you wish to receive a CPMS training session and for any other kind of support, please contact the ERN-RND CPMS Helpdesk:

Sanja Hermanns, University Hospital Tübingen
Email: sanja.hermanns@med.uni-tuebingen.de
Phone:+49-(0)7071-2983003

Péter Balicza, Semmelweis University Budapest
Email: baliczap@gmail.com
Phone: +36-1-4591492

We roll out the CPMS use in ERN-RND use cases per disease group

Disease group Case summary
Ataxia/HSP Training of young neurologists and cohort formation
Leukodystrophies Consensus discussions for therapeutic stem cell transplantations
Atypical PD Variant interpretation of genetic PD cases after NGS
Dystonia/paroxysmal disorders/NBIA Unsolved cases of dystonia, paroxysmal disorders and NBIA after comprehensive genetic testing (incl. eg phenocopies for NBIA)
Choreas and Huntington’s disease Patients with bona fide HD like phenotypes but unknown aetiology
FTD FTD cases with unclear significance after WGS