This survey aims to collect information on the status quo on ERNs and Clinical Research.
It is developed by ERICA WP4 WP4 Clinical Trial Support on the basis of the previous survey delivered in 2018.
The results of the two surveys will be compared to provide a more comprehensive state-of-the-art of ERNs and clinical research.
The survey is addressed both to ERN Coordinators and their ERN HCP members.
Please fill in the survey here: https://ec.europa.eu/eusurvey/runner/ERICAsurvey
The survey will be open [...]
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EATRIS and EPF, together with affiliated partner EATG launched the Patient Engagement Resource Centre (PERC), a platform designed to help researchers better engage patients in their research. The PERC was developed as part of the #Horizon2020 project, EATRIS-Plus.
The PERC is an easy to navigate platform that offers:
publicly available guidance and practical tools video stories FAQ
to support researchers to begin engaging patients in their research, and will ultimately enable researchers to engage with patients in a meaningful way.
The PERC is available now. View and use the platform here: https://patient-engagement.eu/
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We are thrilled to announce a new session of the online course “diagnosing rare diseases: from the clinic to research and back”, which will be offered for free !
Participants will learn about diagnostic research progress, types of genetic tests for rare diseases, and the impact of having or lacking a diagnosis on patients’ lives over 5 weeks. They will also explore rare genetic disease issues and conduct an internet-based investigation on diagnostic research topics. The weekly content is 3 hours, and learners will receive cutting-edge insights.
Expert mentors will be readily available on the platform to address any questions [...]
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🚀Ready to make a difference in #RareDisease research? Join the new session of our MOOC “From Lab to Clinic: Translational Research for Rare Diseases” launching today. Join us to learn about the fascinating journey of translating research into treatments for rare diseases.
Gain insights from patients and experts, understand trial planning, design, and data sharing. With expert guidance, you’ll have a comprehensive understanding of how evidence is built for safe and effective treatments. Join now and make a difference in rare disease research!
More information here.
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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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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
If you want to keep informed about ERICA, please subscribe to our Newsletter.
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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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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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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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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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