Copy
d1089e89-36b8-47e8-9f7d-979a62798cc1.jpg 54fd7b31-8dc1-42ae-9c7e-4019164a6ddc.jpg

EUROPEAN NETWORK ON RARE PRIMARY IMMUNODEFICIENCY, AUTOINFLAMMATORY AND AUTOIMMUNE DISEASES

contact-rita@ern-net.eu Follow Us Twitter icon

Latest News OF ERN RITA

August 2018

Dear colleagues, Welcome to the latest news of ERN RITA. We have updates for you with all the recent developments of the European Reference Networks, as well as those activities specific to ERN RITA.

Further to this year’s continued assessment of HCP‘s with Agencia de Calidad Sanitaria de Andalucía [ACSA] we would like to reiterate the importance of engaging with the ERN platforms (ECP and CPMS) and to encourage you get involved with the activities of the network. We understand they are not the simplest systems, but they are most appropriate methods of sharing information, so we appreciate your patience and there is of course support available to assist you all with everything needed to get you up and running.

The ERN RITA Steering Group and Working Group Chairs are currently preparing the grant application for funding for years 3 to 5 for ERN RITA which is due in September 2018.

Thank you for your support and commitment.

— Professor Andrew J Cant – ERN RITA Co-ordinator

Monitoring AND Evaluation

ASCA have selected 2 of the ERN RITA HCP’s for assessment in September 2018

Events

Read More
Read More

Have you seen the updated website yet?

http://rita.ern-net.eu

Visit our website to see the changes, your feedback is important to us, take a look at the latest version and let us know your thoughts.
 

contact-rita@ern-net.eu

Please remember to use this address for all ERN RITA emails

European Collaborative Platform (ECP)

PLAZA - new common collaboration platform

The ECP has been updated and the new release contains a new feature, ‘Plaza’, a common collaboration platform for the whole ERN community. A central forum for the whole ERN community where ECP users from Member States, different ERNs, patient organisations and the European Commission can enter and exchange information. It will be the place where messages can be posted across the ERN community. Access to Plaza will be automatically granted during your next connection to ECP. This new network will then appear on your main ECP dashboard.

As Plaza is a common collaborative platform for the ERN Community we expect you to publish posts that are of relevance for the whole ERN community, or a large part of it. The specific collaborative spaces are still there for exchanges on information strictly related to their activities. But if, for example, you want to share information related to a survey conducted by a working group, you can post that on Plaza.

From the Commission side they will inform through Plaza on their activities which concern the ERN community (e.g. press release, ERN videos available in all EU languages). Also news on the publication of calls for tenders or calls for proposal could be posted on Plaza.
 

EC-Analysis on European Collaborative Platform (ECP) Usage:

Solve-RD - Solving the unsolved Rare Diseases

A large consortium led by the University of Tübingen, the Radboud university medical center Nijmegen and the University of Leicester has acquired a €15 million grant for the Solve-RD research program. SOLVE-RD aims to improve the diagnosis and treatment of rare diseases, which in total affect millions of Europeans.

Four ERNs, ERN-RND (rare neurological diseases), EURO-NMD (neuromuscular diseases), ITHACA (congenital malformations and intellectual disability), and GENTURIS (genetic tumor risk syndromes) build the core of Solve-RD and they are reaching out to patient cohorts across all 24 ERNs in order to achieve their aims. In addition to the four core ERNs the clinical-genetic network of Solve-RD covers six associated ERNs as well as the undiagnosed disease programmes of Italy and Spain and the Epi25 collaborative. These networks bring in the relevant European clinical and research experts as well as unique cohorts.
 
  • UDN Italy
  • Spanish Undiagnosed Rare Diseases Program (SpainUDP)
  • EpiCare
  • MetabERN
  • ERKNET
  • Euroblood
  • ERN-RITA
  • ERN-BOND
  • Epi25 Collaborative

Marielle van Gijn, Chair of the Molecular Testing Working Group will lead on ERN RITA’s participation of this project. Read more http://solve-rd.eu

RD-Connect - Webinars and Invitation to Register

An invitation for ERN HCPs to join RD-Connect, an international platform for rare disease data analysis and data sharing.

RD-Connect is an EU-funded integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research. It provides user-friendly tools for data analysis and links different data types - omics (e.g. genomics), clinical information, patient registries and biobanks - into a common resource. By enabling scientists and clinicians around the world to analyse and share data and biosamples, RD-Connect speeds up research, diagnosis and therapy development to improve the lives of patients with rare diseases.

RD-Connect has built three integrated online systems open to any rare disease and a series of webinars have been planned to let you learn how the RD-Connect tools can help you in your everyday work. The main areas of focus are as follows:-

  • Genome-Phenome Analysis Platform for analysis and sharing of omics data to diagnose patients and discover new disease genes
  • Registry & Biobank Finder, a global directory of rare disease patient registries and biobanks
  • Sample Catalogue, which helps researchers find rare biosamples stored in biobanks

Interested in joining the RD Connect Community? Find out more and register here https://rd-connect.eu/news-article/ern-invitation/

Brexit and ERN RITA Coordination

With Brexit pending and the uncertainty of the impact this may have on cross-border healthcare between the UK and the EU, if there is a to be a ‘Hard Brexit’ it is anticipated that UK centres may no longer be able to co-ordinate an ERN. The EU have requested that all UK Cooridnating centres nominate a centre in pectore should this scenario occur. All HCP’s have now been notified of the Executive Board’s decision to nominate Dr. von Hauner Children’s Hospital, Munich as the in pectore co-ordinating centre for ERN RITA.

All HCP’s are welcome to nominate another HCP if they disagree with this decision. Please email any further proposals to contact-rita@ern-net.eu before the 7 September 2018.

Clinical Patient Management System (CPMS)

18 out of 24 ERN RITA HCP’s are now registered to the CPMS.

Links for CPMS training and support are still available online within the ECP and CPMS platform. There are also guidelines available to help you with registration. Please do not hesitate to contact SANTE-ERN-CPMS-ITSUPPORT@ec.europa.eu if you require assistance with registration.

DG SANTE has provided two documents describing patient safety and GDPR issues that have satisfied the majority of Member States and the use of the platform is beginning to rise.

Again we encourage you to register for the platform and it is important to ensure that those nominated by your centre are ready to actively engage in the panels and CPMS consultation process. RITA urgently needs those experts from relevant disease streams in each of the HCPs to register and become available for panels. Up to now, only two thirds of RITA HCPs have done this. Without sufficient pool of experts the consultations will not be possible as the time burden associated with this has to be evenly distributed among all HCPs to make this effort realistic.
 

Informed Consent Form

The informed consent form from the EC is in line with the European data protection standard to share health data within the ERNs to develop diagnoses and care plans, not for patient treatment. All HCPs need to check the provided consent form with their national or local authorities’ practices and combine the consent form with local standards if necessary. The consent form and guidelines are available in the ECP. These have been crafted with the GDPR in mind and has been considered a best-practice by the European Data Protection Supervisor (EDPS). It complies with the general data protection requirements in EU data protection law for consent.

Please email feedback to contact-rita@ern-net.eu if you have any further concerns, to enable us to address these as soon as possible. With the creation of the new role within ERN RITA, CPMS Helpdesk. We will be in contact with the centres individually over the next few months to follow up with training issues that prevent individual centres from participating.

EC-Analysis on CPMS Activity

http://rita.ern-net.eu
ERN logo EU logo RITA logo






This email was sent to <<Email Address>>
why did I get this?    unsubscribe from this list    update subscription preferences
ERN RITA · UMC Utrecht · Heidelberglaan 100 · Utrecht, 3584 CX · Netherlands

Email Marketing Powered by Mailchimp