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Patient group research and trial design

This course will explain how research and trial design takes place, the key considerations for rare diseases and how patient groups can get involved.

Throughout the course patient group case studies will highlight examples of involvement in research, trial design and drug development.


Find out more about what this course will cover in this video.

With thanks to:

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Costello Medical provided pro-bono support in the creation of this course.

Resource type


Skill level



Est. 1-2 hours

Last updated

May 2022

Resource type

Course/Video Guide/Webinar/Event Recording/Guide

Skill level



Est. X hours

Last updated

Month Year

What will you learn?

  • How clinical research is traditionally structured


  • The considerations and adaptations for rare diseases
  • The different ways in which patient groups can get involved



Who is this course for?

This guide has been developed for patient group leaders, staff or volunteers to:

  • Provide information and guidance for patient groups on how scientific research and trials are designed and run
  • Aid further understanding of the challenges and potential solutions when designing clinical trials in rare diseases
  • Increase awareness of where and how patient groups can get involved to have the greatest impact on research and trial design