Involving Children and Young Patients and Families' in Designing Clinical Research - Online Course

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


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

Edition of the course: 4th Edition

Course Enrollment:  Enrollment is open from 18/01/2021 until the end of this edition of the course (4th)

Starting date: 1st Feb 2021

Closing date: 30th Apr 2024

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.


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: unrestricted


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 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.



  • 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 –