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Online workshop | Getting involved in research and trial design

30th November at 11:00 am - 2nd December at 1:00 pm

Findacure is delighted to announce its next online workshop: Getting involved with clinical research and trial design.

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 who design research and clinical trials for rare conditions.

Patients and patient groups have often been 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 towards involving patients and patient groups in research from the get-go, as it has been recognised that their voice and insights are invaluable in ensuring effective outcomes and success.

This means that patient organisations whose goal is to drive research in order to find treatments need to understand the clinical research process and the way they can influence research design and strategy.

This workshop aims to cover the basics of clinical research strategy and demonstrate the ways in which patients and patient organisations can be actively involved in the process. How can patient organisations prepare effectively for involvement whilst practically supporting patients through trial participation?

11:00am - 1:00pm, Tuesday 30th November 2021

Day one of our workshop will look at how clinical research and clinical trials actually work.

The session will cover:

– The basic structure of clinical research

– The key planners in running a clinical trial

– The language used in clinical research

– How research is used to inform treatments

– Adapting trials for rare diseases

11:00am - 1:00pm, Wednesday 1st December 2021

Patient groups have to prepare effectively to be involved in clinical research and the trial process.

The session will cover:

– Patient influence and impact in clinical research

– Patient group case studies

– The perspective of industry partners

11:00am - 1:00pm, Thursday 2nd December 2021

Once clinical research is underway it requires a level of resources and input in order to sustain involvement.

The session will focus on:

– Patient recruitment and retention in clinical trials

– The role the patient organisation can play  in managing involvement

– Patient experiences being part of clinical trials


30th November at 11:00 am
2nd December at 1:00 pm
Event Category:


Philippa Norman