Happy to announce that the ERICA Advisory Board is complete!
In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Endocrine cancer: A challenge in adults and children” aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute.
The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National Research Institute in Gliwice, Poland.
Registration closes on January 28th, 2022
EMA and the Heads of Medicines Agencies (HMA) are launching a pilot project to support the repurposing of medicines as a follow-up to the European Commission’s Expert Group on Safe and Timely Access to Medicines for Patients (STAMP) discussions on a proposal for a medicines repurposing framework.
The European Commission (EC) has opened a new funding call titled “Tackling diseases (Two Stage – 2022) (HORIZON-HLTH-2022-DISEASE-06-two-stage)” in the context of the Horizon Europe Framework Programme on the development of new effective therapies for rare diseases.
Support for proposals from EJP RD
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 [...]
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 [...]
ERICA WP4 leader prof. dr. Ralf-Dieter Hilgers participated ERN Liver Meeting in Hamburg to give a workshop and to talk about innovative trial designs.
You can find the presentation here: 2021_ERN Liver_Hilgers
And happy to share the published article : Designing clinical trials in Wilson disease – PubMed (nih.gov)
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.