ERNs needs on data analysis (pre-registration)
The Bring Your Own Omics Data workshop (BYOOD) workshop (17th-18th November 2022) is aiming to help ERNs to optimise and integrate their omics data, initiate network analysis, and continue collaborations with the data analysis team.
If you are part of the ERN, please help the EJP RD workshop organising team to further understand what your ERNs needs on data analysis are and complete this pre-registration from by the 2nd of September 2022 through the following link (takes only few minutes!):
The Smart Guidance tool for the FAIRification of rare disease registries was released on the 18th of July. This is a questionnaire-based tool built on the Data Stewardship Wizard that will guide users (e.g., data stewards) through the process of making their registry more FAIR. It covers various aspects like the composition of the FAIRification team, best practices for data representation, and giving access to your data.
The tool is accessible via: https://smartguidance-rd.ds-wizard.org/ (after signing up)
The User Guide is available here which gives you guidance on how to get started on a Smart Guidance project [...]
Networking Support Scheme Submission
Deadline: September 1st.
The Networking Support Scheme is back. The aim of the NSS call is to encourage knowledge-sharing between health care professionals, researchers and patients on rare diseases and rare cancers, as well as to enable or increase the participation of usually underrepresented countries in Europe in new and existing research networks. Eligible applicants are health care professionals, researchers, and patient advocacy organisations from the following countries involved in the EJP RD: Armenia, Austria, Belgium, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Georgia, Greece, Hungary, Ireland, Israel, Italy, Latvia, Lithuania, Luxembourg, Malta, Norway, [...]
IRDiRC is pleased to announce that the IRDiRC‘s Rare Diseases Research Initiatives State of Play 2019-2021 Report will be published on Tuesday, 05 July 2022.
This report is based on scientific articles and press releases published between 2019 and 2021; it seeks to inform stakeholders and the rare diseases community about the developments and observed trends in the field of rare diseases research. A chapter is dedicated to an update on the global rare diseases research landscape for the past ten years to celebrate IRDiRC’s 10th anniversary.
More information here: https://irdirc.org/resources-2/state-of-play/
The ERICA 2nd General Assembly took place in Bologna, Italy as a hybrid meeting.
We had three productive days full of interactive sessions and we are thankful for everyone’s active contributions both in Bologna and remotely.
All the presentations are now available at the ERICA Website Download ERICA 2nd GA Summary Report
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Presentations 2GA Bologna
On June 30th, 2022 EJP RD has launch the Innovation Management Toolbox (IMT), a free-to-use and curated reference library of resources in rare disease translational medicine that will provide investigators with self-help resources specific to their needs. The database will be maintained actively!
Learn about the IMT: https://www.ejprarediseases.org/innovation-management-toolbox/ Access the IMT: https://imt.ejprarediseases.org/
Video tutorial for users: https://youtu.be/H92b6WEWFhw
The webinar on “Composite endpoints including patient relevant endpoints (Quality of Life)” is now available here
In this webinar you will learn about:
The procedures to combine multiple endpoints and its limitations The properties and the flexibility of the class of generalized pairwise comparison tests The potential advantages and disadvantages of designing a clinical trial in rare disease with generalized pairwise comparisons primary analysis
You can watch also webinar on Randomization procedures in Rare Disease Clinical Trials here.
All the available ERN Research related webinars: https://erica-rd.eu/events/webinars/
Joint ERICA and EJP RD Workshop “Ethics and regulatory considerations for ERN Data Access Committee members” is now reviewable!
This workshop is the fourth of the ERN data strategy workshop series. It primarily aims to train the members of the ERNs Data Access Committee on the legal and ethical aspects to consider when examining an incoming data access request.
The recording and all the presentations are now available!
View this workshop
Speakers Clémence Le Cornec (ERKNet/EJPRD/ERICA – Heidelberg Universitätsklinikum) Franz Schaefer (ERKNet/EJPRD/ERICA – Heidelberg Universitätsklinikum) Faisal Ahmed (Endo-ERN – University of Glasgow) Jelena Malinina (EURORDIS) Leonardo Cervera [...]
The Blackswan Foundation , IRDiRC and EJPRD are hosting the 7th RE(ACT) Congress and 5th IRDiRC Conference that will be held in person in Berlin, Germany from March 15th – 18th, 2023.
The joint event “RE(ACT) Congress and IRDiRC Conference 2023” aims to bring together scientific leaders and experts and young scientists from various breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss rare diseases research policies. Patients and patient organizations committed to research will also be in attendance to share their experiences and perspectives.
The RE(ACT) Congress and IRDiRC Conference 2023 represents an exciting program with [...]