The ERN-RND annual meeting took place on
the 7th and 8th June 2018 in Prague, Czech Republic.
This two days reunion gathered ERN-RND network
members, ePAG representatives and EpiCARE
(ERN for rare and complex epilepsies).
It was the opportunity to reflect on the first year
of existence of the ERN-RND, feedback and
talk about next steps.
Members were split into different disease group sessions where the same topics were discussed including diagnostic flowcharts, clinical rating scales, care quality indicators, guideline related activities and the CPMS:
- Frontotemporal Dementia,
- Choreas and Huntington’s Disease,
- Dystonias, paroxysmal disorders (non-epilectical ones) and Neurodegeneration with Brain Iron Accumulation
- Cerebellar Ataxias and Spastic Paraplegias
- Atypical Parkinsonian Syndromes
- Care harmonization and eHealth services by Sophia Varadkar from EpiCARE
- Holistic care and expectations from the network by ePAG Cathalijne Van Doorne
- CPMS and other ERN IT tools
Next main steps:
- Consensus on and communication of diagnostic flowcharts
- Consensus on and communication of disease rating scales
- Use of the Clinical Patient Management System (CPMS) in concretely defined use cases
- Together with EAN develop process to develop guidelines for rare neurological diseases
Thanks to all for coming, we hope you enjoyed it and found it useful!
ERN-RND Coordinating team.