The Clinical Patient Management System (CPMS)

The Clinical Patient Management System (CPMS) is a web-based clinical software application allowing healthcare providers from all over the EU to work together virtually to diagnose and treat patients with rare, low prevalence and complex diseases. The CPMS is accessible to all ERN CRANIO members. However, ‘guest accounts’ can also be granted for healthcare professionals from non-member countries should they wish to seek expert advice from the network. This video provides an overview of the CPMS. 

We encourage ERN CRANIO members to register on the CPMS and make active use of it. Please contact the ERN CRANIO project managers with any queries on CPMS registration and use. The project managers are also able to provide login credentials to the CPMS training environment if requested. 

ERN CRANIO customised data set in CPMS:

ERN CRANIO plans to develop an ERN CRANIO-specific data set on the CPMS to ensure all relevant information is collected. 

Development of an ERN CRANIO registry:

In May 2019 the Consumers, Health, Agriculture and Food Executive Agency (CHAFEA) published the annual work programme 2019 for grants under the third programme for the union’s action in the field of health (2014-2020). This includes an ERN call for rare disease registries. 5/24 ERNs already received funding from the health programme (annual work programme 2016) and have/are currently developing their own rare disease registry.

This call published under the annual work programme 2019 was open for the remaining 19 ERNs, such as ERN CRANIO, to apply for financial support. ERN CRANIO submitted an application to receive such financial support, proposing to build a registry focused on the outcome of treatment using standardised diagnosis specific outcome sets (starting with craniosynostosis and cleft lip/palate). The application proposes to include patient reported outcome measures and outcomes on patients’ quality of life.

The application is currently in the grant agreement phase.