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Rare Chat | Patient group experiences in research and trial design

5th October at 1:00 pm - 2:30 pm

During our next RareChat on Tuesday 5th October at 1pm we will be discussing the role that patient groups can play in the design of research projects and clinical trials.

Why register? 

We all know that in the rare disease community, being a patient often means being an expert in your rare condition and the experiences of your community. Yet this expertise is often overlooked by those whose role it is to design research into and trials for rare conditions. Patients and patient groups are often seen as a novelty or ‘nice to have’ element in the design of projects rather than as active collaborators and key partners throughout the entire process. However, in recent years there has been a slow shift in involving patients and patient groups in research from the get go as it has been recognised that their voice and insights can be invaluable in ensuring effective outcomes and success.

This RareChat will give you the opportunity to share your personal experience of being part of research projects and trial design. We will discuss the opportunities that open collaborations can bring to patient groups and the challenges associated with patient advocates securing a seat at the table for research projects and trial design.

Come ready to discuss:

  •  Challenges you and your community have faced with involvement in research projects
  • Opportunities you have had to actively take part in the research or trial design process
  • Ways in which industry or healthcare collaborators have helped or hindered your involvement in the research process
  • Any projects you have encountered that support and encourage the involvement of patient groups in research and trial design
  • Your experiences of any innovative projects taking place that have succeeded in integrating patient involvement in research and trial design

Organiser

Philippa Norman
Email:
philippa@findacure.org.uk