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 created to inform ERNs about specific aspects of clinical trial research. Last webinars are incorporation with “Conect4children” (c4c)-a IMI2 project and a Dutch non-profit that provides services to academia and industry that accelerate the design and conduct of paediatric clinical research. All the webinars are recorded and available in our webinar library. Topics include: 

• c4c expert advice, patient and public involvement, data standards
• c4c trials, education and training
• REMEDI4ALL / drug repurposing and clinical trial readiness by Anton Ussi
• Framework for Patient Engagement in Clinical Trials

Upcoming EURORDIS Patient Partnership Webinar- Unlocking ERN Potential: Disease Specific Measures 24-7-2024 3PM CEST

The increasing recognition and diagnosis of rare diseases over the past decade has led to a growing body of knowledge within specialised clinical teams and centers. This expansion is evident in the European Reference Networks (ERN), which connect over 1,600 clinical teams from more than 300 specialised hospitals in the EU/EEA region. The challenge now is to transform this collective expertise into real-world evidence that can enhance diagnosis, care, and treatment. The next step is the development of disease-specific outcome measures that reflect the effectiveness of care and treatment for each rare condition. These measures provide a common framework for experts to share knowledge and learn from each other, effectively turning the networks into a knowledge-sharing system. This webinar presents examples of such measures, their development, and the crucial role of patient representatives, demonstrating the benefits observed by the ERNs through this approach.

Pilot with Endo-ERN Clinical Trials & Follow-up

One of the goals of ERICA is to design an interactive ERN research web-based platform in cooperation with Orphanet. Listing of ERNs-related data will be exported from the Orphanet database for its representation in ERICA’s website and providing further access to Orphanet. To allow for data extraction and export, Orphanet will add an annotation in its database to identify those research projects, clinical trials performed by ERNs, and quality control the data in collaboration with ERN coordinators.  Additionally Orphanet will retrieve clinical trials also on ERNs websites.  In the ERICA CT repository will showcase the unique (either ongoing or finalised) Clinical Trials or Observational Prospective Studies (including both academic and Industry driven studies) within the specified time period that involve ERN members from two different Member States, acknowledging the ERN. After Successful pilot with Endo-ERN, we continue with next group of 10 ERNs to verify and retrieve their clinical research activities for the ERN CT Repository. 

ERN input to ACT-EU priorities- Survey!

The aim of the survey is to identify needs and priorities of academic stakeholders involved in clinical trials, integrating them into the work of ACT EU. It seeks to address challenges in conducting clinical trials in the EU faced by ERNs and academics, highlight topics needing further clarification or discussion, and propose solutions for improving and accelerating clinical trials. Academic stakeholders are encouraged to contribute ideas for improvement across various aspects of clinical trial governance and implementation, clinical trial methodologies and data analytics, regulatory processes, safety monitoring, training, and emergency preparedness. Please contribute!

EJP RD Survey

This survey aims to assess the knowledge of Rare Diseases research resources and tools, and evaluate the impact of the European Joint Programme on Rare Diseases (EJP RD) on the research community.  As a member of the Rare Diseases research community, your input is invaluable. This survey will helps to understand how well the gaps have been addressed in rare diseases research and guide our future efforts in data processing and service provision in the upcoming European Rare Disease Research Alliance partnership.

World Orphan Drug Congress Europe 22-25 October 2024 in Barcelona

The World Orphan Drug Congress Europe is the largest and most established orphan drug & rare disease event worldwide. Meet over 2000 attendees, hear from 250 leading speakers, and connect with 130 exhibitors as we bring together experts from the start-to-finish of orphan drugs. From regulation and policy, to global pricing and gene therapy.

If you are a member of an ERN, patient group organization, charity or government (including public health bodies, HTAs, regulators), you are eligible for a free VIP pass.

ERDERA: Research funding – opportunities for ERNs

ERDERA has the ambition to improve the health and well-being of the 30 million people living with a rare disease in Europe, by making Europe a world leader in RD research and innovation, to support concrete health benefits to rare disease patients, through better prevention, diagnosis and treatment. We aim to integrate all the successful results of ERICA into ERDERA. During the JARDIN (the EU4Health Joint Action on integration of European Reference Networks (ERNs) into national healthcare systems) kick-off meeting ERICA and Endo-ERN Coordinator Alberto Pereira presented an overview of the funding opportunities for ERNs in ERDERA. 

Stay Tuned!

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