An innovative approach for the patient involvement in the paediatric clinical research: the role of YPAGs

An innovative approach for the patient involvement in the paediatric clinical research: the role of YPAGs

Over the last years, a Europe-wide trend towards a patient-focused approach and the involvement of patients is developing and is influencing the decision-making process related to the clinical research.

Patients involvement in paediatric clinical trials is recognized as an important added value at European and international level and an essential contribution to paediatric clinical research.
To foster patients’ empowerment, advocacy groups including young patients and healthy youngers, named YPAG (Young Persons Advisory Group), have been established from New Zealand to France, from Great Britain to the United States, with the aim to provide new perspectives and attitudes in the designing and conduction of paediatric clinical trials. Currently, 21 YPAGs exist across the world and work together within the iCAN (International Children’s Advisory Network) consortium to provide a voice for children and families in health, medicine, research, and innovation with a global impact.

At European level, eYPAGnet, the European YPAG’s network (member of Enpr-EMA) has been established and is coordinated by the Hospital Sant Joan de Déu (Barcelona) with the mission to improve the capacity of collaboration with the different actors who participate in the research and development process of innovative drugs.
YPAGs aim to help the professionals involved in the clinical trials to overcome some though issues of the clinical research. For example, they could help to open and complete on time the trials, or could improve the recruitment of patients to agreed target and the retention of patients to completion.
In general, through the YPAGs, the clinicians involved in the trials could meet the needs of the patients, designing the study according to their necessities.

In this context, Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF) in collaboration with the TEDDY Network and the paediatric University Hospital Azienda Ospedaliero-Universitaria Consorziale Policlinico di Bari – Ospedale Pediatrico “Giovanni XXIII” has recently created the first Italian Young Persons Advisory Group (YPAG) in Bari (named KIDS Bari).
The main objective of KIDS Bari is to help researchers develop research questions, design trials, improve communication with the target population, and brainstorm methods for dissemination of findings. In other word this means “Advocacy”: paediatric patients take care of themselves, stating their right to be informed through the most adequate language and means, and providing voice to their opinions.

A new group in Tirana, named KIDS Albania, has been launched by Consorzio per Valutazioni Biologiche e Farmacologiche – Dege e shoqerise se huaj (CVBF Albania) in September in collaboration with the TEDDY European Network of Excellence for Paediatric Clinical Research and the University Hospital Center “Mother Teresa”, service of paediatrics (Tirana).

2017-12-24T12:53:58+00:00 24/12/2017|Categories: News & Events|