Active engagement of children and adolescents in the themes of clinical research

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:

favicon 57Promoting 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.

favicon 57Encouraging 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.

favicon 57Providing 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.

favicon 57Developing 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.

favicon 57Promoting the development and dissemination of age-tailored information materials, summaries of the results and awareness campaigns through the direct involvement of patients.

favicon 57Encouraging 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

Doriana Filannino
 dfilannino@cvbf.net

Bianca Tempesta
 btempesta@cvbf.net

Angelica Initini
 aintini@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