Current Status

Not Enrolled

Price

Free

Get Started

How patient groups can get involved in research and trial design

Patient groups can play an important role throughout the different stages of clinical (and pre-clinical) research.

Patient groups are often best placed to play these roles, as they have a detailed understanding of the disease, good communication with patients and access to lots of patient information.

Patient groups have a key role in making sure the patient experience is considered when scientists are planning, running and analysing a clinical trial and can help ensure that treatments that are valuable to patients are developed.

This course outlines the various stages where patient groups can get involved in research and trial design using expert patient group case studies from those who have successfully done so with their organisation.

With thanks to:

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

Resource type

Course

Skill level

Intermediate

Duration

1.5 hours

Last updated

May 2022

Resource type

Course

Skill level

Intermediate

Duration

1.5 hours

Last updated

May 2022

What will you learn in this course?

  • Patient group case studies of involvement in research, trial design and drug development
  • Research priorities, design and planning
  • Recruiting patients and managing participation
  • Research conduct and operations

Who is this course for?

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

  • Increase awareness of where and how patient groups can get involved to have the greatest impact on research and trial design

 

icon

Suggested pre-reading

We recommend that you enroll in our course “Rare disease research and trial design” before enrolling in this course to learn:

 

  • The basics of clinical research
    • Pre-clinical research
    • Clinical research
    • Ethical considerations
  • Clinical trials for rare diseases: challenges and solutions

Resource Content

Where can patient groups get involved?
Research priorities
Research design and planning
Research design and planning
Case study: Niemann-Pick UK (NPUK)
Case study: Huntington’s disease
Case study: Spinal muscular atrophy (SMA) Europe
Research conduct and operations
Research conduct and operations
Case study: Myotubular Trust
Recruiting patients and managing participation
Case study: Alkaptonuria (AKU) Society
Case study: Reverse Rett
Summary
Acknowledgements
Feedback
Further your learning