Involving children and young patients and families’ in designing clinical research course

The course will start on 9th of December 2019.

Spaces for this course are limited to a maximum of 10 people from each National Hub. If you would like to register, please contact your National Hub.

 

Who is the course for?

  • Principal investigators of clinical trials and other related personnel (e.g. research nurses, study coordinators)
  • Patient and Public Involvement (PPI) liaisons of the National Hubs.

General Description  

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

This is a self-directed e-learning course with an approximate duration of 3 teaching hours. All slides for the course, as well as a PDF document with additional information for each chapter, will be available for download.

At the end of the course, delegates will complete a self-assessment test with multiple-choice questions on the course content.

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

 

Course Outline

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

Faculty

  • Jennifer Preston – Senior Patient and Public Involvement Manager, University of Liverpool – Chapter 1
  • 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 at CVBF – Chapter 4
  • Pamela Dicks – Network Manager at Scottish Children’s Research Network – NHS – Chapter 5