Expression of interest to participate in a paediatric patient expert group (PEG) in the context of the European INVENTS Project
Are you an adolescent between 12 and 18 years old with an interest in healthcare, biomedical research, children’s rights, and innovative methodologies in clinical research?
Are you a patient living with arthritis (including rare juvenile idiopathic arthritis, polyarticular juvenile idiopathic arthritis, systemic juvenile idiopathic arthritis, giant cell arteritis) or multiple sclerosis?
Are you willing to acquire the skills to contribute to making the research world more inclusive for young patients and child-centred?
If yes, join the paediatric expert group (PEG)!
Empowering young people is crucial for incorporating their opinions in the research and drug development process, communicating unmet priorities to stakeholders, and enabling them to participate in decisions regarding their health.
Under the framework of the European Invents project (HORIZON-RIA, N°101136365), the TEDDY European Network of Excellence for Paediatric Research seeks to create a PEG to educate and empower children and adolescents about the progress of biomedical research, including the latest advancements in health data and in clinical research methodologies and their relevance to certain paediatric rare diseases.
The purpose of this PEG is to ensure the proper collection of patients’ health data, including methodological considerations for data collection, reporting, management, and analysis, along with meaningful patient input.
Applications are now open to participate in the selection procedure (more information below)
This initiative is designed for young patients like you to actively participate in scientific research and express their own views. It will help you play an important role in improving research and healthcare services for thousands of young patients worldwide who need effective therapies.
In the first place, to be an active contributor, you need to be well-trained, informed and properly educated on the main subjects related to scientific, biomedical research and in silico models.
The adoption of innovative methodologies in clinical research represents an emergent approach that helps develop drugs faster and more effectively. These innovative methodologies, so-called in silico models and real-world data (RWD), are important because they do not imply the execution of clinical trials in children but involve, among others, the reuse of previously collected data.
Insightful training courses will increase your knowledge on the subject by providing training material, workshops and courses on scientific innovation and research. Engaging activities will be organised in English, and the young PEG members will be invited to attend both face-to-face and virtual meetings.
The first online introductory meeting, followed by a face-to-face training meeting will be held in early November 2024.
The training will foresee case studies, practical activities and discussions to ease your understanding of the topics.
The workshops will be performed in English and delivered by a team of professionals, such as paediatricians, investigators, psychologists, representatives of patients’ associations, YPAG facilitators, legal, ethical, and regulatory experts.
The participants will be selected according to the following criteria:
- Patients living with arthritis (including rare juvenile idiopathic arthritis, polyarticular juvenile idiopathic arthritis, systemic juvenile idiopathic arthritis, giant cell arteritis) or multiple sclerosis and/or their siblings
- Good English proficiency
- Age between 12 and 18 (exceptionally, patients up to 24 years will be considered)
- European country (a fair geographic representation will be guaranteed)
- Motivation and interest in improving health research through participation in specific advisory groups or paediatric patients’ organisations (based on the outcome of a pre-questionnaire)
If you are interested in joining the PEG to advocate for rare disease research, please fill in the application form via this link:
The deadline for sending your application is September 27, 2024.
All the applications will be evaluated by the members of the TEDDY European Network of Excellence for Paediatric Research.
Your parents and you will be informed about the selection results by October 2024.
If you are under 18, legal consent by your parents or legal representatives and your assent form will be required.
Please be informed that your personal data will be kept strictly confidential. All information will be handled through very secure electronic systems and used only for the purpose of the initiative.
