CompletedObservational

CFHealthHub Data Observatory

Cystic fibrosis is a lifelong condition where daily inhaled medicines are vital for keeping the lungs clear and avoiding chest infections. However, fitting daily treatments into a busy life can be really hard. This study looks at whether a digital tool called CFHealthHub can make things easier. CFHealthHub works alongside a special nebuliser that tracks when you take your medicine. You can view your progress on a secure website and use simple tools to build lasting treatment habits. Your CF care team can also see this information if you choose to share it, helping them give you more personalised support. The study is open to people aged 16 and older across 17 UK hospitals. Researchers hope this project will improve daily care, help people stay well, and cut down on distressing emergency hospital stays.

At a glance

Status

Completed

Sponsor

Sheffield Teaching Hospitals NHS Foundation Trust

Enrolment target

2,000

Start

25 May 2017

Estimated completion

31 Mar 2025

Cystic Fibrosis

What is this study about?

Cystic fibrosis is an inherited condition that causes thick, sticky mucus to build up in the lungs and digestive system. To stay well, people with cystic fibrosis often need to take daily inhaled medicines using a nebuliser. These treatments help clear mucus and fight off serious chest infections. However, keeping up with these time-consuming treatments every single day can be exhausting and difficult, especially for busy adults.

When treatments are missed, lung infections become more likely. This can lead to emergency hospital stays, which are stressful for individuals and their families. Researchers created CFHealthHub to find a better way to support people with their daily routines. CFHealthHub is a secure website that connects to a 'smart' nebuliser. It records how often and how long you take your medicine, turning that data into easy-to-read charts.

By taking part, you gain access to personalised tools and resources designed to help you build steady habits. Your CF clinic team can also review your progress with you during your regular appointments. The main goal of this study is to see how this digital platform can be smoothly introduced into normal NHS care to help people manage their health better and stay out of hospital.

Key takeaways

CFHealthHub uses a smart nebuliser to track your inhaled cystic fibrosis treatments automatically.
The secure website gives you helpful tools and feedback to build strong daily routines.
You have full control over whether your clinic team can see your nebuliser data.
There are no experimental drugs involved—you simply take your normal medicines.
The study aims to improve long-term lung health and reduce unexpected hospital admissions.
Taking part is free, completely voluntary, and runs through participating NHS hospitals.

Who may be eligible?

This study is open to people living in the UK who are 16 years of age or older and have a confirmed diagnosis of cystic fibrosis. Your details also need to be recorded on the UK Cystic Fibrosis Registry, which is standard for most people receiving cystic fibrosis care in NHS hospitals.

You should already be taking inhaled treatments (such as antibiotics or medicines to clear mucus) using a smart nebuliser that tracks your doses, such as an eTrack or I-Neb device. If you do not currently use one of these devices, you can still join if you are willing and able to switch to one for your inhaled treatments.

You will not be able to take part if you cannot give your own informed consent to join the study. It is always best to check with your hospital CF team to see if your local clinic is one of the 17 participating centres.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

I am aged 16 or older.
I have been diagnosed with cystic fibrosis.
My details are on the UK Cystic Fibrosis Registry.
I take inhaled medicines (such as mucus thinners or antibiotics).
I use, or am happy to switch to, a trackable nebuliser (like eTrack or I-Neb).
I can give my own informed consent to take part.

Answer every question to see your result.

What does participation involve?

If you decide to take part, you will have an initial visit with your hospital CF team to go over the study and give your consent. Your team will either provide you with a new smart nebuliser or update your current device so it can securely send information to CFHealthHub. They will show you how to log into the website, use the habit-building tools, and manage your privacy settings—including how to turn data sharing with your care team on or off whenever you like.

Once set up, you carry on taking your inhaled medicines at home as you normally would. Your smart nebuliser will quietly record the time and duration of each treatment. From time to time, you will also be asked to answer brief online questionnaires about any daily challenges you face with taking your treatments. There are no extra medications to take, and your clinic visits will usually fit in with your regular CF check-ups. The overall study runs until March 2025.

Potential risks and benefits

Taking part may help you build stronger daily habits and better understand your treatment patterns, which could improve your lung health and overall wellbeing. Your CF team may also be able to tailor your care more closely to your real-world needs. There are no physical health risks or new medications involved in this study. The main drawback is the small amount of time needed to learn how to use the website, set up your nebuliser, and complete occasional short surveys. Taking part is completely voluntary, and you are free to leave the study at any time without your regular NHS care being affected.

Locations (17)

Sheffield Teaching Hospital NHS Foundation Trust
City only
Sheffield, England
Nottingham University Hospital NHS Trust
City only
Nottingham, England
University Hospital Southampton NHS Foundation Trust
City only
Southampton, England
Frimley Park Hospital
Approximate
Camberley, England
The Royal Victoria Infirmary
City only
Newcastle upon Tyne, England
Norfolk and Norwich University Hospital
Unverified
Norwich, England
Royal Stoke University Hospital
Unverified
Stoke-on-Trent, England
John Radcliffe Hospital
Unverified
Oxford, England
St Bartholomew's Hospital
Unverified
London, England
Royal Cornwall Hospital
Unverified
Truro, England
Royal Devon and Exeter Hospital
Unverified
Exeter, England
Heartlands Hospital
Unverified
Birmingham, England

Common questions

Do I have to take any new or experimental drugs?

No. You will continue to take your usual inhaled medicines. The study only changes how you track your treatments using a smart nebuliser and website.

Can my doctors see my information without my permission?

No. The system puts you in control. You can turn the data-sharing feature on or off at any time using your personal account settings.

What is a 'smart' or chipped nebuliser?

It is an electronic nebuliser (like an eTrack or I-Neb) that records the date, time, and length of your treatment. It safely sends this information to your CFHealthHub profile.

Will taking part require lots of extra hospital visits?

No. Most of the setup happens during your normal clinic appointments, and you use the CFHealthHub website and nebuliser at home as part of your normal routine.

What happens if I decide I want to stop taking part?

You can leave the study at any point. Simply tell your CF team. Leaving will never affect the quality of your regular NHS treatment or your relationship with your doctors.

How to find out more

Sophie Farrell

sophie.farrell3@nhs.net +44 114 222 4027 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.