ERICA WP4 Clinical Trial Support webinar
Wednesday May 24th
From 15:00 to 16:00 CEST
Speakers
Virginie Hivert, EURORDIS- Rare Diseases Europe
María Cavaller Bellaubi, EURORDIS- Rare Diseases Europe
During the webinar ‘Framework for Patient Engagement in Clinical Trials’ they will talk about ‘what is patient engagement’ and its good practices and patient engagement in the ERNs’.
ERICA WP4 Clinical Trial Support webinar
Wednesday May 10th 2023
From 12:30 to 13:30 CEST
The main objective of the webinar will be to give an overview of Patient-Reported Outcomes Measures (PROMs) and Patient-Reported Experience Measures (PREMs) in clinical research.
Céline Desvignes-Gleizes from Mapi Research Trust will provide an introduction on PROMs and PREMs and accordingly, will address the following questions:
What are PROMs & PREMs? What do I need to know about PROMs & PREMs before including them in a clinical trial? At what point of the preparation of a clinical [...]
The ERICA 3rd General Assembly takes place 6-7 July in Madrid as a face-to-face meeting.
Hosted by Servicio Madrileno de Salud- Hospital Universitario La Paz (SERMAS-HULP). Coordination office of ERN-TransplantChild.
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.
The aim of the General Assembly (GA) is to inform all the beneficiaries about the progress of the planned and completed ERICA project activities in more detail and to raise more awareness [...]
Aim: Learning from monogenic diabetes as a model of precision medicine by genetic diagnosis and elaborating a proposal of a study design to apply precision medicine in other rare genetic diseases.
Target group: medical doctors, geneticists & molecular researchers affiliated to an European Reference Networks
Registration deadline: 23 March
ERICA WP4 Clinical Trial Support webinar “Designing and conducting clinical trials in rare diseases – what industries expect for partnering with clinical sites”
Diego Ardigò, Chiesi Group Parma, Italy
14th April 2023 12:30-13:30 (CET)
The webinar will focus on describing the key elements for success in participating as investigator in an industry sponsored clinical, with a specific emphasis on rare diseases, highlighting the key needs from the industry side and the common reasons for failure. The goal is to get to a common understanding of the key requirements for conducting such studies, [...]
ERICA WP4 Clinical Trial Support webinar “Definition of orphan drug by the EMA”
Armando Magrelli, Istituto Superiore di Sanità (ISS) Roma, Italy
The so-called ‘orphan drugs’ are intended to treat diseases so rare that sponsors are reluctant to develop them under usual marketing conditions.
The process from the discovery of a new molecule to its marketing is long (10 years in average), expensive (several tens of millions of euros) and very uncertain (among [...]
In the ERICA WP4 Clinical Trial Support webinar “Essential requirements before thinking about a clinical trial” we will overview what should be done at the very least before starting a clinical trial in a study site. All the requirements will be discussed according to the role that an investigator may have in the trial. Some guidance and sources will be also provided.
Speaker: Viviana Giannuzzi, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus
Organised by ERICA in collaboration with EJP RD and ERN BOND
As part of the training activities proposed by EJP RD, an 3-day training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners. The training will be held in Rome, Italy on 3-5 April 2023.
Through the presentation of sample use cases that have long eluded diagnosis, the course will provide participants with with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed rare diseases cases. Moreover, the course will facilitate networking among professionals involved in [...]
In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “EJP RD – ERN Workshop: RARE TOGETHER” is being organized by Dr Rosanne Smits from Radboud University Medical Center.
The in-person event will take place on 8-9 May 2023 at Van der Valk Hotel in Nijmegen-Lent, The Netherlands.
Registration is open here, and closes on February 1st.
The workshop, open to all research levels and aims to to raise awareness for the psychosocial impact of having a rare disease and form a group of researchers in the mental well-being and social sciences domain for rare diseases.
[...]
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 [...]