The focus of this WG is the active engagement of children and adolescents in the themes of clinical research. The main objectives of the working group are:
Promoting dialogue among different actors (patients, carers/family representatives, expert patient advocates) to increase the active engagement of children and adolescents in the themes of clinical research.
Encouraging active participation and self-determination of patients and parents in the caring procedure, and promoting their involvement in the revision of clinical study protocols and in the study development.
Providing patients with all the critical tools and expertise to make decisions regarding his/her health and interact with healthcare professionals, with a particular focus on rare diseases.
Developing a clear guidance on Patient and Public Involvement (PPI) in different areas of the medicines development process in order to enhance quality and relevance of the research itself.
Promoting the development and dissemination of age-tailored information materials, summaries of the results and awareness campaigns through the direct involvement of patients.
Encouraging the sharing of information and best practices among the different Young Persons Advisory Groups at European level and worldwide.
WG reference person:
Mariangela Lupo
mlupo@teddynetwork.net
Members:
Rosa Conte
rc@benzifoundation.org
Bianca Tempesta
btempesta@cvbf.net
Begonya Nafria
bnafria@sjdhospitalbarcelona.org
Federico Martinón Torres
federico.martinon.torres@sergas.es
Cristina Serén Trasorras
Cristina.Seren.Trasorras@sergas.es
Jenny Preston
prestonj@liverpool.ac.uk