ERICA Newsletter Winter 2023 is out! read here…
Read about PROMs repository and upcoming events like ERICA GA 6-7 July in Madrid and Clinical Trial Webinars
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During this EJPRD webinar, distinguished lecturer Franz Köning will explain what is meant by master protocols comparing basket, umbrella and platform trials. Great opportunity to gain valuable insights into cutting-edge statistical methods for Rare Diseases Clinical Trials. Don’t miss this incredible opportunity to expand your knowledge and enhance your research skills.
📚Title: Statistical and Operational Challenges with Master Protocols
🇬🇧Language: English
🚨Registration deadline: 23 March 2023
ℹ️: https://www.ejprarediseases.org/event/statistical-and-operational-challenges-with-master-protocols/
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 [...]
The ERICA 3rd General Assembly takes 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 [...]
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/
Aim: Learning from monogenic diabetes as a model of precision medicine by genetic diagnosis and elaborating a proposal of a study design to apply precision medicine in other rare genetic diseases.
Target group: medical doctors, geneticists & molecular researchers affiliated to an European Reference Networks
Registration deadline: 23 March
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, [...]
ERICA WP4 Clinical Trial Support webinar “Definition of orphan drug by the EMA”
Armando Magrelli, Istituto Superiore di Sanità (ISS) Roma, Italy
28th March 2023 12:30 – 13:30 (CET)
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 [...]
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
28 February 2023 from 12:00 to 13:00 (CET)
Organised by ERICA in collaboration with EJP RD and ERN BOND
[...]
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 [...]