The Clinical Patient Management System (CPMS) aims at supporting ERNs in improving the diagnosis and treatment of rare or low prevalence complex diseases across national borders of Member States in Europe. The system enables healthcare professionals to upload patient cases and collaborate with other healthcare professionals to provide diagnosis, care and treatment.

The CPMS is supported by Virtual Communication Tools and DICOM viewers to facilitate the interaction between clinicians. Overall, the system allows the most knowledgeable healthcare professionals to collaborate virtually so there is no longer a need for the patient to travel to receive a diagnosis or treatment; furthermore, it allows clinicians to use a secure web-based application to ensure all information provided is completely confidential.

We hope for the CPMS to provide improvements in patient care, diagnosis and treatment since the system is constantly updating and enabling Healthcare Providers to as many different medical features as possible whilst maintaining a user-friendly environment.

To find out more about creating a profile and using the CPMS, click here.

You can access the CPMS via the following link: https://cpms.ern-net.eu/login/

There’s a variety of different features that have been added to the Clinical Patient Management System in order to make communication between healthcare professionals as simple as possible. There are frequent updates with new items added and the developers regularly take requests for new applications and ideas. A selection of CPMS features have been listed below:

  • DICOM viewer – DICOM images can be uploaded onto the CPMS and then by using the DICOM viewer all panel members can view these. The user can flip and rotate, annotate and zoom into the images.
  • Digital Pathology viewer – This feature comes as a completely separate viewer which can be used in any web page to display dynamic maps.
  • Pedigree tool – This feature allows patient’s ancestry to be tracked in the form of a family tree and shows the family members who possess the genetic mutation in question. The Pedigree Tool also hosts many other options.
  • Multi-check coding systems – Healthcare professionals can pick one or more of the coding systems that are available in the CPMS to enter data on a specific condition or procedure such as ICD-10, Orphanet, MedDRA and LONIC.
  • Research – Medical researchers can request access to the CPMS and utilise the Research section of the systemwhich allows anonymised data to be viewed.
  • Performance Indicators – The CPMS automatically records different statistics such as the amount of active users and open panels as well as generating an Activity Report

In order to access the CPMS each user is required to request access using their EU Login. This is to fully verify each user to ensure they are a Healthcare Professional within the EU Member States.  The first thing that each user needs to be aware of is what accesses they would like to have.

The different roles are listed below with a description when selected:

  • HP

This is the standard access profile for doctors, nurses and professionals regulated in healthcare activities. The HP role means you have access to enrol patients and see all patients enrolled within your Healthcare provider. You will need to request HP access if you wish to access the coordinator or dispatcher roles.

This role allows a user to enrol patients, submit panels and participate in panels.

  • Coordinator

This role is designed for the ERN Coordinator, however it may be the case that more than one member of an ERN may be required to become a Coordinator. The coordinator engages in activities such as forwarding panels and handling access requests. A Co-ordinator also has access to Key Performance Indicators (KPIs).

This role allows a user to enrol patients, submit panels and participate in panels. The Coordinator can also assist in assembling panels when requested to do so and forwarding panels onto other ERNs if necessary. They can also use access the Performance Indicators in order to monitor users.

  • Dispatcher

The role delegates one task of a Coordinator, in particular the handling of requests for assistance from other ERN Members to the ERN Coordinator. A Dispatcher is able to handle these requests on behalf of the Coordinator so a clinical background is preferred; other than having the authority to delegate tasks this role is almost identical to the HP role. Dispatchers do not have access to KPIs.

This role allows a user to enrol patients, submit panels and participate in panels. They also support the Coordinator with tasks.

  • Researcher

A Researcher doesn’t take part in panels and for this role it isn’t crucial to be a healthcare professional. The researcher role allows access to anonymised data in order to create reports and analyse data.

This role allows the user to have access to the Research section of the system to use different anonymised data submitted.

All of the links to request access to CPMS are available on the website: https://cpms.ern-net.eu/login/#/journey/dashboard/

Patient care and consent is incredibly important to EURO-NMD and using the CPMS will maximise security of patient data whilst discussing possible treatments, diagnosis and care. When a healthcare professional submits a patient case onto the CPMS, the minimum level of consent that must be provided by a patient is Consent for Care. This will be explained before the case is submitted to CPMS and a form will be given for the patient to sign detailing whether they consent to their de-identified data being shared within ERN(s). The form will also ask if the patient consents to de-identified data being included in the ERN database or registry and if the patient would like to be contacted about research. This is a legal requirement in line with GDPR (General Data Protection Regulation) and patients have a right to access data held about them and to request correction to any errors they might find at any point.

The CPMS uses data which has been anonymised and so healthcare professionals other than the clinician directly involved with the patient will not be able to view any identifiable data including

the full name of the patient; instead the CPMS uses nicknames.

Once a patient has consented to their data being provided onto the CPMS the clinician can commence the process of enrolling the patient and opening a panel. The patient may need to attend further consultations to gather more data to be uploaded onto the CPMS if this is requested. However, the patient will not need to provide any further information to the healthcare professional. Once the panel has concluded the patent will receive findings, recommendations and a treatment plan.

We hope that the CPMS process will be a lot less invasive and stressful for the patient as there is no need to travel to different Healthcare Providers and different countries. Furthermore, the process will hopefully be a lot quicker and so patients can be treated and diagnosed much faster than before.

If you have any queries or difficulties regarding the CPMS, you can contact the CPMS Helpdesk on: support@ern-euro-nmd.eu or call 0191 241 8839 requesting to speak to Chloe Blewitt (CPMS Helpdesk Coordinator)

There is also a dedicated Helpdesk Website which can be used to view FAQs about the CPMS and raise tickets with the Helpdesk Staff.

If you have any suggestions for new features or software please contact the ERN IT SUPPORT CPMS staff on: SANTE-ERN-CPMS-ITSUPPORT@ec.europa.eu

CPMS User Guide – an overall guide demonstrating how to access the CPMS, submit a panel and the different features available

CPMS Technical Requirements – Shows the technical requirements in order to run the CPMS and the different features such as recommended browsers

Accessing the CPMS – This guide will demonstrate how to request access to the CPMS

Logging into the CPMS – This guide demonstrates how to log into the CPMS using the different methods of two step authentication