Enrollment is open from 18th January – 30th April 2024

Name of the course:
Involving Children and Young Patients and Families’ in Designing Clinical Research

Edition of the course: 4th Edition
Starting date: 1st Feb 2021
Closing date: 30th Apr 2024
Course duration: 3hr


To enrol in this course, please contact your National Hub who will supply you with the course password.
Your National Hub’s Referent Person for Training and Education will verify your eligibility to enrol to the Course and provide you with the Course’s enrolment password.
Once you receive this Course’s Enrolment Password from your National Hub, please log in on  c4c Academy Platform.
If you don’t have an account yet, click on Create new account and follow the instructions.

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.

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 interested into taking part in the course, please contact your country’s National Hub.

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


  • What we mean by involvement and why we should involve children, young patients and families

  • Regulatory framework and children, young patients and family involvement

  • Explore approaches on how to implement children, young patients and family involvement throughout the research pathway

  • Practical planning for effective children, young patients and family involvement

  • Ethics, children, young patients and family involvement

  • Monitoring and evaluating the impact and added value of children, young patients and family involvement on the design and delivery of clinical research.

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

Blooms Taxonomy level 5


  • 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

  • Nuria Noel – Supervisor – nnoel@fsjd.org