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Promoting ERICA and ERNs Research cooperation
The ERICA project and ERN supporting activities are getting more awareness and ERNs are including regularly ERICA updates to their meetings. ERICA Coordination team, ERN Coordinators and WP-chairs have been great ambassadors to ERICA and ERN clinical research community by promoting its activities.
Networking events have been a great opportunity to connect with the active ERN researchers. ERICA has been matchmaker between ERNs, who are progressing at different speeds, but are eager to cooperate and learn from each other. Above is a photo ERICA and Endo-ERN Network Coordinator Professor Alberto Pereira, who held his inspiring Inaugural Lecture in January 26th in Amsterdam on the topic 2034 , a welcome opportunity for all his colleagues to glimpse the future that will be the work of the next decade in rare disease landscape in Europe.
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ERICA 3rd General Assembly 6-7th July 2023 in Madrid, Spain
The ERICA 3rd General Assembly will take place 6-7 July in Madrid as a face-to-face meeting. Hosted by Servicio Madrileno de Salud- Hospital Universitario La Paz (SERMAS-HULP), the Coordination office of ERN-TransplantChild. This symposium serves as a great opportunity to ‘meet and greet’ the active ERN research community both within and between different Expert WGs and to discuss the progress and future of the ERN related Research activities.
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Repository of Rare Diseases' PROMs
The ERICA WP3 tries to identify what are the Clinical Outcome Assessments (COAs) measures that are already or could be available for RD because they are more generic and could be wider applicable.
The main aim is to develop a central repository of validated common and domain specific RD PCOMs/PROMs for ERNs to be used for their clinical research. To identify the State of the Art(SoA) of the existing PCOMs and PROMs and also the mapping the gaps are made in order to define priority areas for future PCOMs/PROMs development and for validation to support ERNs in the implementation of validated instruments for PCOMs/PROMs. Patient Reported Outcome Measures (PROMs) Repository is the first attempt to identify and centralize COA questionnaires of relevance for rare diseases. It constitutes a milestone in the Europe-wide standardisation of Patient-Centered Outcome Measures (PCOMs) and PROMs for rare diseases. Via ERICA you can also request access to PROQOLID™ -a comprehensive online database designed to assist among others, academic researchers, physicians, students in the search and evaluation of Clinical Outcome Assessments (COAs).
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ERICA WP4 Clinical Trial Support Webinar series
To stimulate the development of inter-ERN Clinical trials on diseases that overarch different ERNs, a series of WP4 Clinical Trial Support webinars are scheduled to inform ERNs about specific aspects of clinical trial research. All the webinars will be recorded and YouTube videos will be made accompanied by Factsheets. A webinar library is available and include such topics as:
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ERICA WP4 Clinical Trial Supportwebinar "Definition of orphan drug by the EMA "Armando Magrelli, Istituto Superiore di Sanità (ISS) Roma, Italy
28th March 2023 12:30 - 13:30 (CET)
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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)
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IRDiRC: Opening for a new member for Interdisciplinary Scientific Committee
The International Rare Diseases Research Consortium (IRDiRC) opening for Interdisciplinary Scientific Committee (ISC). 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.
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EJP RD: ERN Workshop: Genetics and Precision Medicine in Rare Diseases
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
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EJP RD: Online Training Statistical and Operational Challenges with Master Protocols
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.
Registration deadline: 23 March 2023
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Stay Tuned!
Check our ERICA website regularly for news updates and keep an eye on upcoming and previous events that can be reviewed! Disseminate relevant news to your network and subscribe to our Newsletter.
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Want to know more about ERICA ?
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