Search Results for "matchmaker"

ERN ‘Matchmaker’ Resource

The ‘Matchmaker’ process is designed to be user-friendly and straightforward:

  1. Anyone interested in joining an RD ERN/establishing cross-talk with others in the same Thematic Grouping should click on the appropriate link below
  2. The user will be directed to a Form which requests several few core details
  3. Upon submission of this form, the data will be transmitted to the RD-Action team at Newcastle University, UK
  4. At intervals of approximately 3 weeks a spreadsheet of the responses received for each Thematic Grouping will be emailed to all those submitting their data under that same Thematic Grouping
  5. The onus is then on the specialists to use this information to make contact with one another, to continue to shape applications in each field, with the aim of encouraging collaboration and avoiding duplication

Please note that this process is informal and is entirely separate to the formal EC and MS activities around ERNs. Regrettably, RD-ACTION is not able to provide tailored support with ERN applications. Please also note that in each of these areas, coordinators have been established and proposals are quite advanced

! The Matchmaker will no longer accept new entries after 30th April; however, you will be able to find details of the Proposals here

 


European Reference Networks (ERNs)

RD-Action continues the work of the previous Joint Action (EJA) to support the Rare Disease field in conceptualizing, implementing, and evolving  European Reference Networks (ERNs).

 Summaries of the 24 ERNs

The ERN Coordinators’ list is now available, along with details of the proposals

Key Outputs of RD-ACTION: 

OUTPUT and LINK DESCRIPTION DATE PUBLISHED
Workshop Report on ‘Indicators and Outcomes for ERNs’ The dedicated webpage for our Workshop on Indicators and Outcomes for ERNs hosting the agendas, presentations and outputs.  June 2017
Workshop Report on ‘Using Standards and Embedding Good Practices to Enable Interoperable Data-Sharing in ERNs’ The dedicated webpage for our Workshop co-hosted with DG SANTE, 26-27th April, hosting the agendas, presentations and outputs.  April 2017
Workshop Report on ‘Exchanging Data for Virtual Care in the Framework of ERNs’ and ‘Highlights & Conclusions’ Documents : The dedicated webpage for our Workshop on 28-29 Sept 2016 in Brussels, hosting the agendas, presentations and outputs. February 2017
RD-ACTION analysis of the key issues regarding ERNs and Registries, Dec 2016 An internal analysis of some of the key overlaps and differences between registries and clinical datasets, in the context of ERNs December 2016
Report of the Meeting between the ERNs and the Board of MS The official report of the first formal meeting of the Board of MS of ERNs and the ERN Coordinators (applicant, at the time) November 2016
eHealth & Interoperability Task-Force 1st-year-summary-and-next-steps-for-2017 This is the summary of the first year of operations of the TF on Interoperable data-sharing in the framework of the operations of ERNs – dedicated iTF pages (containing for instance the meeting and workshop reports) can be found here  October 2016
What do Coordinators require from an ERN ICT platform?: A policy support paper compiling responses from the ERN Coordinators and mapping these against the Published Tender Specs August 2016
RD-ACTION-ERN-Matchmaker-Summary-Final (May) Summary of the RD-ACTION informal Rare Disease ERN ‘matchmaking’ exercise May 2016
RD-Action Matchmaker – Summary of disease expertise recorded under each Thematic Grouping A summary of diseases proposed under each Thematic Group is available

An active Google Docs spreadsheet is in generation, to update this

April 2016

Meaningful Patient Involvement

As per the legal Acts and the Addendum to the Recommendations on RD ERNs, active patient involvement and patient-centeredness is essential in ERNs. EURORDIS has launched the EPAG (EURORDIS Patient Advisory Group) initiative to enable democratic patient representation – full details (and the names of appointed representatives) may be found here 

 

Resources and FAQs on ERNs