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) [...]
ERICA WP4 Clinical Trial Support webinar
Wednesday May 24th
From 15:00 to 16:00 CEST
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’.
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 [...]
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 FAQto 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/
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 [...]
🚀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!
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 [...]
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.
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 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 [...]