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ERN Data Management Strategy Workshop in Heidelberg
ERICA WP2 Data Collection, Integration and Sharing organised a face-to-face workshop on building an ERN Data Management Strategy Workshop in Heidelberg on the 17th-18th of October 2022. This multi-stakeholders workshop focused on developing a strategic and operational ERNs Data Management Strategy. Objectives of the workshop were to provide an opportunity for the stakeholders (patients advocates, researchers, industry, and regulatory authorities) to present their needs and expectations regarding the use of ERN registry data and discuss all the relevant aspects of implementing an ERN wide strategy for data management. Based on the results and outcomes of the workshops it is intended to develop a consensus white paper on the ERNs data management strategy. Access and more info via ERICA office.
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Repository of Rare Diseases' PROMs
The ERICA Patient Reported Outcome Measures (PROMs) Repository is the first attempt to identify and centralize Clinical Assessment Outcomes 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. The repository has been made possible through the joint collaboration between Orphanet, Mapi Research Trust/ICON and ERN EuroBloodNet (VHIR, APHP), and the active contribution of ERNs and ePAGs. The central repository is a dynamic and evolutive service and should be regarded as a centralized and standardised access gate to more in depth information contained in PROQOLID™.
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ERICA Educational Webinar 2 “Practical guide on how to use the Catalogue of services and the IMT”
In this webinar, Anton Ussi (Operations & Finance Director at EATRIS), Rosan Vegter (Scientific and Education Manager at EATRIS) together with Agustin Arasanz Duque (Senior Innovation Manager at VHIR/EATRIS), provided practical guidance for using two important tools for RD researchers, developed within EU-funded projects: ERICA and EJP RD. This webinar is part of the Educational Webinar Series from ERICA’s WP5 Translation and Innovation.
Webinar recording available!
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Rare Disease Clinical Trial Workshops tailored for ERNs
ERICA Clinical Trial Support (WP4) co-chair prof. dr. Ralf-Dieter Hilgers in line with the ERICA objectives offers a tailored workshops for the ERNs on Clinical Trials design for Rare Diseases. This is a very elegant tool to increase and foster clinical trials implementation. He has already given workshop for ERN Liver Meeting and will participate in Endo-ERN General Assembly meeting in April 2023 to talk about innovative trial designs. Please contact ERICA office if you are interested as ERN in such expertise and workshop.
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International Conference on Clinical Research Networks for Rare Diseases 1-2 December
The International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) are jointly organizing a two-day conference on clinical research networks (CRNs) for rare diseases, which will take place on December 1 and 2. The objective of this conference is to gather experts from different continents to increase mutual knowledge on CRNs structure, activities and identify pathways to stimulate collaboration and interoperability of these networks.
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Upcoming free EJP RD training: "Biobanking in rare diseases: the Poland experience". The training is dedicated to scientists of biomedical sector who want to learn about biobanking standards in #RareDisease research. Date: 28-29 November 2022
Registration deadline: 10 November 2022
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As part of the training activities proposed by the EJP RD, a 2h30 training course titled “The Statistical Evaluation of Surrogate Endpoints in Clinical Trials” is being organised. The fully online event will take place on November 18th.
Registration is currently open until November 14th.
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In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Epidermolysis bullosa: from genes to translation into therapies” is being organized by Prof. Dr. Cristina Has of the University Hospital Freiburg. The in-person event will take place on 23-24 March 2023 in CIBSS – Centre for Integrative Biological Signalling Studies in Freiburg, Germany. Registration is open until December 15th.
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Update on ”MOOC on Diagnosing Rare Diseases: from the Clinic to Research and back. Mentors and educators, experts in the field, are available online to answer your questions and to support you during your journey in this EJP RD MOOC until December 3rd, 2022. Take the opportunity to interact with them!
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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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