Welcome to the PCD-ENGAGE Dedicated Page!
PCD-ENGAGE is a non-drug study co-designed by PCD Support UK and Aparito that aims to understand if people with PCD’s engagement with physiotherapy and exercise can be improved through the use of technology.
If you want to learn more about PCD-ENGAGE and whether you are eligible, please take a look at this video:
What’s a ‘trial’?
It’s research! Normally, when we think of clinical trials, we think of medicines. PCD-ENGAGE is a drug-free trial.
What does it involve?
This study looks at whether support from an app and a fitness tracker can improve your physio routine, quality of life, and how many infections you get over 12 weeks. Everyone in the study will get access to the app, and 50% will get a fitness tracker. Those who complete the 12 weeks will receive a £20 Amazon voucher as a thank you. Although the trial lasts 12 weeks, you may continue for an additional 12 weeks. In this extension phase, all remaining participants will receive the fitness tracker.
Can anyone take part?
Patients must meet of the following criteria to be eligible for this trial:
• Age 14+
• Live in the UK
• PCD diagnosis and regularly doing physiotherapy.
• Able to speak and understand English.
• Able and willing to engage with the technology.
• Access to an internet connected smartphone with iOS or Android.
Before the study starts you will be asked to answer some questions to determine whether you are eligible to participate in the study. You will be asked questions regarding your age, age at diagnosis of PCD and current health state.
You will also be asked to provide a proof of PCD diagnosis, such as a letter from your specialist centre, and genetic information, if available. Please have these ready.
If eligible, you can join the study by signing the electronic consent form to say that you agree to take part.
If you are younger than 18, your parent or legal guardian will need to sign the consent form, you will then need to sign an assent form to say you agree to take part.
Why should I take part?
You don’t have to take part. But if you do, it may help you improve your physio, fitness and general wellbeing. It will also contribute to important research in PCD.
How do I enrol?
If you want to join the study, please go to: http://pcd-engage.atom5.co.uk/
We recommend using a laptop (or similar) when signing up as you will need to upload some documents.
Got questions?
If you have any issues or questions during sign-up, please email: [email protected] or PCD Support UK on [email protected]
You can also call +44 1978 896 191 for assistance.
