The TEDDY Network in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation in the framework of the European Joint Programme on Rare Diseases (EJPRD), has organised the first paediatric expert patients training workshop.
The workshop, held online, is now concluded and TEDDY is already preparing the second workshop of the 2022, that will be held face-to-face.
The workshop was organised in 5 different meetings in which young participants learned about:
- General introduction about the EJPRD goals and activities, and rare disease peculiarities;
- What is clinical research, the different phases of clinical research, and the main elements of the clinical protocol;
- Organization of the practical case study about rare diseases;
- General data protection regulation (GDPR) rules and impact for research as well as of the children’s rights in processing personal data for research data protection, including an overview on informed consent and assent form;
- Overview of the regulatory framework of the paediatric research as well as the basic concepts of adverse events and monitoring.
This first paediatric training workshop has been a great success, counting with 15 patients with a chronic rare condition, aged from 12 to 18 years including, and coming from 9 different countries.