In this meeting we will begin to curate the list of Domain specific Common Data Elements (DCDEs) compiled by the EJP RD FAIRification stewards from the data dictionaries provided by the ERN registries. The aim of the DCDEs is to be able to share domain specific data between ERNs, data that is not currently covered by the Common Data Elements (CDEs). Hence we would very much like to have your opinion in the curation of these data items to make sure it is maximally useful for you.
Please feel free to forward this invitation to anyone in your ERN or [...]
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This workshop will be the first of the ERN data strategy workshop series. During this first workshop, we will discuss the techniques and algorithms to anonymise and pseudonymise healthcare data from patients with rare diseases. A special focus will be given to the challenges associated with preserving the privacy of patients with rare diseases. The advantages and drawbacks of pseudonymised and anonymised data both in terms of research outcomes and privacy protection level will be discussed. Finally, in relation with the GDPR regulation, the legal implications of sharing anonymised and pseudonymised data with external stakeholders will be examined. Following these [...]
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ERICA Work Package 6 WP6 “Integration, Outreach & Dissemination” Expert Working Group (EWG) meeting.
Meeting chaired by: Alberto Pereira, Maurizio Scarpa and Ana Rath
Outreach and project dissemination are the hallmarks of this action.
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ERICA WP4 Clinical Trial Support
co-chair prof. dr. Ralf-Dieter Hilgers in line with the objectives of ERICA offers a tailored workshops for the ERNs on Clinical Trials design for Rare Diseases. This is a very elegant tool to increase and foster clinical trials implementation. He has already given workshop for ERN Liver Meeting and will participate in Endo-ERN General Assembly meeting in April 2023 to talk about innovative trial designs. Please contact ERICA office if you are interested as ERN in such expertise and workshop.
You can find the presentation here: 2021_ERN Liver_Hilgers
And happy to [...]
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In this webinar, Anton Ussi, ERICA WP5 co-lead from from EATRIS will introduce the cutting edge resources and research services provided by the European Life Science Research Infrastructures (LS RIs) in the field of rare diseases. This webinar will empower ERN researchers to use the wide range of preclinical, clinical, regulatory and development services provided by the European infrastructures ranging from samples, data & databases, technologies & facilities, models & tools to expertise & advice.
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ERICA Work Package 6 WP6 “Integration, Outreach & Dissemination” Expert Working Group (EWG) meeting.
Meeting chaired by: Alberto Pereira, Maurizio Scarpa and Ana Rath
Outreach and project dissemination are the hallmarks of this action.
WP6 has tight inter-connection with other WPs, coordinate the outreach to multiple stakeholders, develop and maintain a central ERN research website (incorporation with Orphanet), and to disseminate all ERN research results.
All ERNs should be represented in this Expert WG.
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The ERKReg, a Web-based registry for all patients with rare kidney diseases, recently established by the European Rare Kidney Disease Reference Network (ERKNet), has just crossed the 10,000 patients mark.
This important milestone was reached after the 10,000th patient has been enrolled in the Registry by Ghiles Larbi from the Necker Hospital in Paris, France. Almost 1800 patients have already been enrolled from the Necker Hospital!
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Open Research Europe (OCE) is an open access publishing platform for the publication of research stemming from Horizon 2020 funding across all subject areas. The platform makes it easy for Horizon 2020 beneficiaries to comply with the open access terms of their funding and offers researchers a publishing venue to share their results and insights rapidly and facilitate open, constructive research discussion.
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On Thursday 27th May 2021 (from 10.00 – 16.45 h) & Friday 28th May 2021 (from 10.00 – 15.45 h) the kick-off meeting and the 1st General Assembly of the European Rare Disease Research Coordination and Support Action (ERICA) was held.
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