How ERN-ITHACA Helps Health Professionals?

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources.

The ERN-ITHACA brings together experts in rare congenital malformations and rare intellectual disability disorders to develop best practice and initiate guideline development where required. It also works on patient registry data, advances training for health professionals and facilitates research. 

To review a patient’s diagnosis and treatment, ERN members convene ‘virtual’ advisory panels of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools (Clinical Patient Management System, CPMS). 

How to use 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 complex conditions across national borders. The CPMS platform is managed by the Commission and facilitates a secure electronic system, designed to help healthcare professionals of the ERN member hospitals to collaborate in the cross-border patients file assessments. At a later stage, the CPMS will become available for healthcare providers outside ERNs to consult the highly specialised experts within ERNs.

Informed consent must always be obtained in order to be allowed to enroll your patient in the CPMS. Consent for care is obligated, consent for ERN databases and registries, and consent to be contacted for research is optional. This form is available for download in 24 EU languages upon login to the CPMS.

To learn more about the CPMS, please visit the dedicated page on our website. 

To know more about how to join the ERN-ITHACA, please write to us at