IRDiRC Announces The Creation of Regulatory Science Committee to Tackle Regulatory Challenges in Rare Disease Research

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IRDiRC, a global collaborative initiative with the vision to enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention, today announced the formation of the Regulatory Science Committee (RSC). The new RSC “brings broad expertise across different stakeholders and geographies allowing for a balanced synergy that will provide insights and guidance into the advancement of IRDiRCs mission” said David A. Pearce, Chair of IRDiRC.

Read the full press release here.

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ERN Data Management Strategy Workshop in Heidelberg on the 17th-18th of October 2022

This workshop took place from October 17th to October 18th, 2022
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WP2 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.

Session Presentations

The presentations of the workshop sessions are now available. In order to download the presentations a password is required. Please request access via ERICA office.

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Bring Your Own Omics Data workshop (BYOOD) workshop 17th-18th November 2022, Nijmegen, NL

This workshop took place from November 17th to November 18th, 2022
EJP RD Quest

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!):

https://forms.office.com/r/62EtZpwfV7

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The Smart Guidance tool for the FAIRification of rare disease registries

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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 [...]

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Open Funding Call

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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, [...]

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IRDiRC‘s Rare Diseases Research Initiatives State of Play 2019-2021 Report

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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/

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The Innovation Management Toolbox (IMT)

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Innovation Management Toolbox

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

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The webinar on “Composite endpoints including patient relevant endpoints (Quality of Life)” video now available

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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/

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“Ethics and regulatory considerations for ERN Data Access Committee members”

This workshop took place on June 30th, 2022
Copie de TRAINING COURSES (3)

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!

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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 [...]

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