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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Congratulations to Alberto Pereira

Albertos oratie ERICA

ERICA and Endo-ERN Network Coordinator Professor Alberto Pereira held his inspiring Inaugural Lecture in January 26th on the topic 2034 , where he considered the possibilities for rare disease care during the next decade at Amsterdam UMC and beyond. As the coordinator of two important projects that will change the rare disease landscape in Europe – Endo-ERN & ERICA – the lecture was a welcome opportunity for all his colleagues to glimpse the future that will be the work of the next decade.

Congratulations Alberto on behalf of ERICA Consortium and thank you for being a great ambassador for [...]

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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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IRDiRC: Opening for a new member for Interdisciplinary Scientific Committee

IRDiRC ISC

The Interdisciplinary Scientific Committee (ISC) is a multi-stakeholder, multi-disciplinary group of experts in rare diseases medical research with a strong expertise in data sharing, registries, biobanks and natural history studies.
ISC has one opening for a new member with experience in rare diseases data sharing, ontologies, natural history, biobanking and registries. Interested candidates are invited to send their resume, biosketch and letter of motivation to  scisec-irdirc@ejprarediseases.org before the 2nd of April, 2023.
More information about the Interdisciplinary Scientific Committee (ISC): https://irdirc.org/isc/

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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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