EFCCA Academy 2020 - Training Certified Patient Experts
We are pleased to announce that our new edition of the EFCCA Academy offering specialized training for IBD patients started on November 18th 2020 via the EFCCA online learning platform. This training will focus on Clinical Trials and is composed of 3 modules:
First Module: “Clinical Trials basics” - 18 November 2020 via the EFCCA online learning platform
Professors Séverine Vermeire and Marc Ferrante from Department of Gastroenterology and Hepatology University Hospitals Leuven / KU Leuven in Belgium introduced the subject. Some of the themes covered were: the different phases in the development of medicines, the revolution in IBD treatment over the years, the efficacy of clinical trials and the safety also in real-world after drug approval. Upon completion of all training modules the Certified Patients will share their knowledge among IBD communities in their countries, teach member association representatives on the subject and also to play an active role with regards to cooperation with pharmaceutical companies at national level.
This first class was attended by 15 IBD patients from 12 countries: Belgium, Bulgaria, Estonia, France, Greece, Israel, Italy, Mexico, Poland, Portugal, Singapore and Spain.
Second Module: “Diving deeper into Clinical Trials” - 17 December 2020 via the EFCCA online learning platform
This module was presented by the following people:
Ana Sofia Correia, a clinical translator specialized in the linguistic validation of Patient-Reported Outcomes, will explain what are Patient-Reported Outcomes and Real-World Evidence, why PROs and RWE are so important and how PROs and RWE are collected.
Rob Camp, Senior Manager for Patient Engagement focused on CABs at EURORDIS will talk about Patient Engagement in clinical trials, Community Advisory Boards, Patient education as part of the Community Advisory Board process or as stand-alone (i.e., Train-the-Trainer).
Annick de Bruin, Senior Director of Research Services at the Center for Information and Study on Clinical Research Participation (CISCRP) will explain why a clinical trial is not the same as standard of care, the difference between the sponsor and the research team, what are eligibility criteria and how to be prepared before participation in a clinical trial.
Third Module: “Breaking the myths around clinical trials” - 25 January 2021 via the EFCCA online learning platform
This module was presented by Prof. Ariel Liebert and speakers from Roche. Prof. Ariel Liebert from the Department of Gastroenterology and Nutrition Disorders, Nicolaus Copernicus University in Toruń (Poland), taught about Clinical trials guidelines, benefits and risks related to participation, the study drug, medical care in progress, participant’s insurance, what to ask before making a decision. He finished his presentation by talking about the most common myths around clinical studies.
A group of speakers from Roche covering a broad range of functions within the organisation and sharing their experience as part of the different role, such as Stefanie Derzsi – Patient Partnership Department, KT Park - Research and Development Department, Amanda Tatro - Medical Department, Jo Phipps - Regulatory Department and Laura Pope - Access Department, shed light in an interactive discussion on how industry is interacting with different stakeholders as part of the drug development process.
For more information about the origins of the EFCCA Academy go to: https://www.efcca.org/en/projects/efcca-academy
This training programme has been supported by an unrestricted grant from the following sponsors:
The EFCCA Academy was created in 2018 following the results of several major surveys that highlighted the main unmet needs of the IBD community. Our pilot project was aimed at providing specialized training addressing some of these unmet needs and appointing Certified Patients to raise awareness on IBD. More info about the EFCCA Academy: https://www.efcca.org/en/projects/efcca-academy