ERN-ITHACA Multidisciplinary Fetal Diagnostics Winter School

ERN Ithaca Winter School

The ERN-ITHACA Multidisciplinary Fetal Diagnostics Winter School will be held in Paris, December 7-8, 2022.

This Winter School aims to address a learning gap in fetal phenotyping, genetic analysis, and data interpretation. As a single-day course it will include basic lectures and in depth-workshops on phenotyping, prenatal genomic testing, and the implications for genetic counselling. To finalize, the program will bridge the addressed fields with interdisciplinary case discussions.

The course is open to specialists and specialists in training in the fields of clinical and laboratory genetics, bioinformatics, obstetrics, pathology with a special interest in prenatal medicine.

The program gathers excellent [...]

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International Conference on Clinical Research Networks for Rare Diseases

International Conference on Clinical Research Networks for Rare Diseases

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.

It is not possible anymore to register for in-person participation, but you can register for the online participation.

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Now available: WP5 Educational Webinar 2 “Practical guide on how to use the Catalogue of services and the IMT”

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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. It builds on the introductory webinar “Current research services available for the rare diseases community” that was organized in November 2021 (available on the ERICA website

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ERN Data Management Strategy Workshop in Heidelberg on the 17th-18th of October 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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“Ethics and regulatory considerations for ERN Data Access Committee members”

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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Training Webinar: Does Randomization matter in RD clinical trials?

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As part of the EJP RD Training series, an advanced-level training webinar on the topic “Does Randomization matter in RD clinical trials?” (held on 14.12.2021)

The training consists of two parts: a 1.5-hour training in less frequently applied randomization procedures and their performance on the level of evidence, followed by 1 hour of panel discussion with experts from regulatory, pharma-industrial, academic, and clinical fields.

Rare Diseases (RD) is an area where national and international multidisciplinary collaborations are valuable to overcome some of the present challenges in research. Comparative trials serve as a major basis for evaluation of new therapies in [...]

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ERICA 2nd General Assembly 20-22 June 2022, Bologna, Italy

Bologna venue

The ERICA 2nd General Assembly took place in Bologna as a hybrid meeting.

Hosted by Istituto Ortopedico Rizzoli (IOR) and ERN BOND Coordinator Luca Sangiorgi.

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.

This was a great opportunity to discuss the progress and future of the ERN related Research activities and to participate in the WP-Specific Expert Working Group sessions to exchange the success stories and to brainstorm with the [...]

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Rare Disease Clinical Trial Webinar: Composite endpoints including patient relevant endpoints (Quality of Life)

Composite-endpoints-including-patient-relevant-endpoints-Quality-of-Life

When assessing the efficacy of a treatment in any Clinical Trial, it is recommended by the International Council for Harmonisation to select a single meaningful endpoint. However, a single endpoint is often not sufficient to reflect the full clinical benefit of a treatment in multifaceted diseases, which is often the case in rare diseases. Therefore, the use of a combination of several clinical meaningful endpoints is preferred. Combining endpoints on a test statistics level or on the level of p-values, in general, ignores the correlation between the endpoints, while combining information on the subject level in composite endpoints does [...]

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EJPRD- ERICA 3rd Joint Workshop “Finding RD registry data in the Virtual Platform”

ERICA EJPRD Joint WS

This workshop is the third of the ERN data strategy workshop series. It is dedicated to the various stakeholders expected to interact with the EJP RD Virtual Platform.

In this workshop, the feedback received from the ERN registries on the level of discovery that should be authorised for either anonymous or authenticated users of the Virtual Platform will be discussed first. The practical use of the VP will be presented in a Demo session. Subsequently, a hands-on session will allow participants to test the Virtual Platform and provide their feedback. Researchers as well as stakeholders from industry, the member states [...]

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ERICA WP3 ‘Patient centred research’ Expert Working Group Kick-off Meeting 8-10 March 2-5 pm

WP3 PCEWG meeting

We are glad to start the new ‘ERICA year’ with the Kick-off meeting of WP3 Patient Centred Expert Working Group (PCEWG) that will be held in two consecutive sessions on Tuesday 8th and Thursday 10th March 2022 from 2 to 5 pm (CET).

Session I will be dedicated to present the work done so far for the identification and codification of instruments for the assessment of Patient Reported Outcomes (PRO) in rare diseases (RD). Session I will give the frame for an open discussion in Session II to better understand and define the RDs community needs in terms of building [...]

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