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by Traceann Rose, Director Patient Engagement, Children’s Tumor Foundation Patients need to have a voice and be a part of the research process because scientists and researchers don’t always know what the other side is experiencing. This underscores the value of patient involvement in research projects and the shift from patients being subject to research...
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The core of the EU-PEARL initiative is to revolutionise the way clinical trials are conducted by making them more efficient and patient friendly through allowing multiple intervention developers to test their candidate drugs simultaneously against a shared placebo group. The conclusion of EU PEARL will see sustainable and reusable Integrated Research Platforms (IRPs) in place...
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Riccardo Alagna, Molecular Biologist and public health expert at the Università Vita-Salute San Raffaele of Milan, and member of EU-PEARL will present the “Handbook for capacity building and site readiness assessment for tuberculosis platform trials” at this year’s European Society of Mycobacteriology (ESM) congress, which will be held from June 28-29 in a virtual format....
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On occasion of NASH Day, we talk to EU-PEARL specialists on Nonalcoholic fatty liver disease Juan M. Pericás and Jesús M. Rivera (VHIR) to learn more about NASH. We also ask them where we are in the fight against this disease and how EU-PEARL is contributing to improve prospects for NASH patients. Today is NASH...
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This question was answered in the manuscript “Identifying challenges in neurofibromatosis: a modified Delphi procedure”, which was published in the European Journal of Human Genetics on April 26th 2021. Britt A. E. Dhaenens, Rosalie E. Ferner, Annette Bakker, Marco Nievo, D. Gareth Evans, Pierre Wolkenstein, Cornelia Potratz, Scott R. Plotkin, Guenter Heimann, Eric Legius and...
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Britt Dhaenens, MD and PhD student at Erasmus University Medical Center (The Netherlands) shares in this interview her amazing journey from patient to researcher. She tells us about her experience in EU-PEARL; the challenges she is contributing to address and the implications for rare diseases patients.  What ignited your scientific vocation? I have been interested...
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On occasion of International Clinical Trial Day (ICTD) we have asked Dr. Burç Aydin, Project Manager at ECRIN and EU-PEARL member, to share his views on the challenges and new opportunities platform trials entail for the future of clinical research. What is the purpose of the ECRIN International Clinical Trials Day? ECRIN launched International Clinical...
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Next May 20th is International Clinical Trials Day (ICTD). EU-PEARL will actively participate in the event organised every year by ECRIN, a partner in the Consortium, to foster debate around multinational clinical trials. This edition, ICTD will focus on platform trials, a topic at the heart of EU-PEARL. Indeed, this IMI project is creating a...
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An overview of our first scientific meeting by Courtney Worrell At the beginning of 2020, myself and the WP4 team were hopeful that in May of that same year we would all come together in central London, joined by some of the most prevalent figures in MDD research. Sadly, COVID-19 had other plans for us,...
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18 April 2021 marks the celebration of the 15th Patients’ Rights Day. Patients’ Rights Day is held every year to support the official recognition of this important day across Europe. This year, Patients’ Rights Day will be celebrated in a two day conference focusing on the role of civic society and patient advocacy groups for...
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