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Trust partners with Emily’s Entourage CF Clinical Trial Connect
Alongside our other work through the Clinical Trials Accelerator Platform (CTAP), this will help make it easier for people with CF to be informed about trials they’re eligible for and ensure the UK continues to be an attractive place to set up a wide range of trials.
What is CF Clinical Trial Connect?
Emily’s Entourage is a charity based in the US that supports research into treatments for people with CF who are unable to benefit from current modulator therapies. This month, they launched their upgraded CF Clinical Trial Connect, a database that aims to make it easier to connect people who are not currently able to benefit from modulators with relevant trial opportunities.
We’ve partnered with Emily’s Entourage so that people with CF in the UK will now be able to join and receive notifications about trial opportunities in the UK they might be eligible for.
Why join CF Clinical Trial Connect?
By signing up to CF Clinical Trial Connect, you’ll receive notifications about clinical trial opportunities opening in the UK aimed at people who are not currently taking modulators. You’ll be sent information about trial opportunities you might be eligible for based on things like your CF gene variant and age.
Joining CF Clinical Trial Connect may also help you stay more informed about what’s happening globally in this kind of research. However, you will only be invited to take part in trials in the UK.
You will still be able to find out about UK trial opportunities via the Trust’s Trials Tracker or by contacting one our CTAP trial coordinators.
There are likely to be an increasing number of trials opening in the UK specifically for people who cannot currently take CFTR modulators. Alongside the other resources the Trust has created to support the community to learn about taking part in research – including our Trials Tracker – the Clinical Trial Connect database will help more people hear about clinical trial opportunities they may be eligible for.
Becca Brendell, Head of the Clinical Trials Accelerator Platform (CTAP)
How to join
Registration is free and takes just a few minutes. You’ll be asked to fill out a simple online form with your demographic, contact and genetic information.
You can join CF Clinical Trial Connect if you are unable to benefit from current modulators, for example, due to having a rare gene variants or being unable to tolerate or benefit from them for another reason.
If you have a child with CF who is under 18 years old, you can also register on their behalf as a guardian.