Children, young patients and family involvement in the design of clinical research - Online Course

Enrolment to the course will be open from 27th January – 17th February

Name of the course: Children, young patients and family involvement in the design of clinical research

Edition of the course: 2

Starting date: 24/02/2020

Closing date: 30/03/2020

Who is the course for?

  • Principal investigators of clinical trials and other related personnel (research nurses, study coordinators, etc)
  • Patient and Public Involvement (PPI) liaisons of the National Hubs.
  • **if you are part of a PoV Team and you are interested into taking part in the course, please contact your Country’s National Hub. The person responsible for Training and Education will be your point of contact as a participant in a c4c Academy Course.

Max. number of persons that each national hub can enrol: 20

Bloom’s Taxonomy Level of the Course: Application and analysis


General Description:  

This course aims to enable delegates to identify activities in the development of clinical trials projects in which patients can contribute, including the design of appropriate methodology and measuring impact.

This is a self-directed e- learning course with an approximate duration of 3 teaching hours.

Users can download all the slides of the course, as well as a pdf document with additional information for each chapter.

Course Evaluation: Reading an article and a final self-exam with 10 multiple-choice questions about the content of the course and the recommended reading article.



  • What do we mean by involvement? Why should we involve children and young patients (CYP) and families in research?
  • Regulatory framework for CYP and family involvement.
  • Explore approaches on how to implement CYP and family involvement throughout the research pathway.
  • Practical planning for effective CYP and family involvement.
  • Ethics, CYP and family involvement.
  • Monitoring and evaluating the impact and added value of CYP and family involvement on the design and delivery of clinical research.



  • Jennifer Preston – Senior Patient and Public Involvement Manager, University of Liverpool – Chapter 1 & 6
  • Virginie Hivert – Therapeutic Development Director, EURORDIS– Chapter 2
  • Begonya Nafria – Patient Engagement in Research Coordinator, Institut de Recerca Sant Joan de Déu – Chapter 3
  • Mariangela Lupo – Project Manager and Networking Coordinator, CVBF – Chapter 4
  • Pamela Dicks – Network Manager, Scottish Children’s Research Network, NHS – Chapter 5