Paediatric Clinical Research
Infrastructure Network

WP5: COMMUNICATION, DISSEMINATION, EMPOWERMENT

Objectives

  • To communicate about PedCRIN with children, parents and families, industry, regulatory authorities, policymakers, healthcare providers and all the relevant stakeholders
  • To ensure that children, young people, parents and families are included in PedCRIN activities
  • To educate and empower young patients and their families during the entire process of a clinical trial (recruitment, development, etc.)
  • To evaluate the impact of the education and empowerment activities on different target groups
  • Development and implementation of a communication and dissemination plan to promote the different activities, goals and deliverables of the project
  • Development of a mini PedCRIN website on the ECRIN website and a newsletter to ensure that project stakeholders and the interested public have information about PedCRIN including project updates/news
  • Development and dissemination of communication materials targeted at different types of audiences
  • Consultation with patients, parents, patient advocates, advocacy groups and Young Persons’ Advisory Groups (YPAGs) to identify the role they have during the management of multinational paediatric trials by, for example, giving active feedback on trial protocols and informed consent material
  • Report of the activities performed regarding patient engagement, perspective integration and impact assessment of the empowerment activities

This Work Package is coordinated by FSJD (Communication, dissemination, empowerment YPAGs ) and VSOP (Consultation, empowerment patients, Newsletter)

The members of this WP are:

ECRIN

CVBF

RUMC

INSERM

HUS-FI

SCTO

KI

HUS-NO

UTARTU

AUTH

OKIDS

NCRC