WP5 Innovation workshop on drug repurposing in rare diseases

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WP5 Translation and Innovation is organizing Innovation workshop focused on drug repurposing in rare diseases.

In the first part of the workshop, we will showcase success stories from two different ERNs as an inspiration for the community. Eduard J van Beers from ERN EuroBloodNet will give talk about mitapivat story and building relations with biomedical industry into investigator-initiated research programmes, and Nicola Specchio from ERN EpiCare will talk about drug repurposing in epilepsy.

In the second part of the workshop, expert Donald Lo from EATRIS (REMEDI4ALL project) will lead interactive session on [...]

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ERICA WP3 ‘Patient centred research’ Expert Working Group

WP3 PCEWG 31.05.23

ERICA WP3Patient-Centred Research Patient Centered Expert Working Group (PCEWG) was held on the 31st of May between 3 pm and 6 pm (CET time).

The workshop’s objective was to present the updates on patient-centered work leads by WP3 During the workshop, WP3 presented the version 2.0 of the PROMs Repository, the approach to identify suitable PROMs for rare diseases with no specific PROMs (diseases functional impact clustering and concepts coding works) [...]

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ERICA WP4 Webinar: Framework for Patient Engagement in Clinical Trials

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ERICA WP4 Clinical Trial Support webinar

Wednesday May 24th
From 15:00 to 16:00 CEST

Speakers

Virginie Hivert, EURORDIS- Rare Diseases Europe María Cavaller Bellaubi, EURORDIS- Rare Diseases Europe

During the webinar ‘Framework for Patient Engagement in Clinical Trials’ they will talk about ‘what is patient engagement’ and its good practices and patient engagement in the ERNs’.

 

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ERICA WP4 Webinar: Introduction on Patient-Reported Outcomes and considerations before including them in a clinical trial. Study case from the ERN-EuroBloodNet

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ERICA WP4 Clinical Trial Support webinar

Wednesday May 10th 2023

From 12:30 to 13:30 CEST

The main objective of the webinar will be to give an overview of Patient-Reported Outcomes Measures (PROMs) and Patient-Reported Experience Measures (PREMs) in clinical research.

Céline Desvignes-Gleizes from Mapi Research Trust will provide an introduction on PROMs and PREMs and accordingly, will address the following questions:

What are PROMs & PREMs? What do I need to know about PROMs & PREMs before including them in a clinical trial? At what point of the preparation of a clinical [...]

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3rd ERICA General Assembly 6-7th July 2023 in Madrid, Spain

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The ERICA 3rd General Assembly took place 6-7 July in Madrid as a face-to-face meeting.

Hosted by Servicio Madrileno de Salud- Hospital Universitario La Paz (SERMAS-HULP). Coordination office of ERN-TransplantChild.

The aim of the ERICA consortium, in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.

The aim of the General Assembly (GA) is to inform all the beneficiaries about the progress of the planned and completed ERICA project activities in more detail and to raise more awareness [...]

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ERICA WP4 Webinar: Designing and conducting clinical trials in rare diseases – what industries expect for partnering with clinical sites

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ERICA WP4 Clinical Trial Support webinar “Designing and conducting clinical trials in rare diseases – what industries expect for partnering with clinical sites”

Diego Ardigò, Chiesi Group Parma, Italy

14th April 2023 12:30-13:30 (CET)

The webinar will focus on describing the key elements for success in participating as investigator in an industry sponsored clinical, with a specific emphasis on rare diseases, highlighting the key needs from the industry side and the common reasons for failure. The goal is to get to a common understanding of the key requirements for conducting such studies, [...]

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ERICA WP4 Webinar: Definition of orphan drug by the EMA

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ERICA WP4 Clinical Trial Support webinar “Definition of orphan drug by the EMA”

Armando Magrelli, Istituto Superiore di Sanità (ISS) Roma, Italy

The so-called ‘orphan drugs’ are intended to treat diseases so rare that sponsors are reluctant to develop them under usual marketing conditions.

The process from the discovery of a new molecule to its marketing is long (10 years in average), expensive (several tens of millions of euros) and very uncertain (among [...]

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ERICA WP4 Webinar: Essential requirements before thinking about a clinical trial

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In the ERICA WP4 Clinical Trial Support webinar “Essential requirements before thinking about a clinical trial” we will overview what should be done at the very least before starting a clinical trial in a study site. All the requirements will be discussed according to the role that an investigator may have in the trial. Some guidance and sources will be also provided.

Speaker: Viviana Giannuzzi, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus

Organised by ERICA in collaboration with EJP RD and ERN BOND

 

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Training on strategies to foster solutions of undiagnosed rare disease

Training on strategies to foster solutions of undiagnosed rare disease cases

As part of the training activities proposed by EJP RD, an 3-day training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners. The training will be held in Rome, Italy on 3-5 April 2023.

Through the presentation of sample use cases that have long eluded diagnosis, the course will provide participants with with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed rare diseases cases. Moreover, the course will facilitate networking among professionals involved in [...]

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