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Real-Life Chronic Rhinosinusitis Outcome Registry

This study, called the Real-Life Chronic Rhinosinusitis Outcome Registry, is for people in the UK and Europe who have chronic rhinosinusitis, often called CRS. It's run by a group of medical experts and organisations who want to learn more about how CRS affects daily life, your health, and your ability to work. They also want to identify who might benefit most from newer treatments, known as 'biologic therapies', and see how well these treatments actually work. You'd share information through a special mobile app, and this data would help doctors understand the condition better and improve care for everyone with CRS.

At a glance

Status
Recruiting
Sponsor
Change Accelerator in Respiratory Care
Enrolment target
4,550
Start
01 Jan 2021
Estimated completion
31 Dec 2025

What is this study about?

Imagine a big, ongoing project across Europe, including the UK, dedicated to understanding chronic rhinosinusitis (CRS) from the real-life experiences of people like you. That's what this study is all about. An international group of doctors and experts, working with patient organisations, are gathering information to get a clearer picture of how CRS impacts everyday life, including its effect on your health, wellbeing, and even your work productivity. They also want to understand the true cost of CRS on individuals and society.

One of the main goals is to discover if people understand how serious their CRS might be and how it affects their quality of life. They're also keen to see how different treatments are working, particularly newer, more targeted medications called 'biologic therapies'. By collecting information over time, doctors hope to learn what makes these treatments successful and who benefits most from them.

This isn't about testing a new drug; it's about learning from people already living with CRS and receiving care. The information you share will help fill in the gaps in our knowledge about this condition. It will allow doctors to make better decisions about treatment and ultimately improve the care and support available for everyone with chronic rhinosinusitis.

Key takeaways

  • A study to understand chronic rhinosinusitis (CRS) better.
  • Uses a mobile app to collect information from patients.
  • Aims to improve future treatments and care for CRS.
  • Not a drug trial; no new medications involved.
  • Your data helps doctors learn how CRS affects real lives.

Who may be eligible?

To be part of this study, you need to be an adult, aged 18 or over, who has been diagnosed with chronic rhinosinusitis by a doctor. It's also important that you're comfortable using a smartphone and can use a mobile app, as this is how you'll share information for the study.

There are a few reasons why someone might not be able to join. For example, if you have certain types of growths in your nose or sinuses, such as cancer or a condition called inverted papilloma, you wouldn't be eligible. Also, if your rhinosinusitis only affects one side of your nose or face, you wouldn't be able to take part.

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.

  1. Have I been diagnosed with chronic rhinosinusitis by a doctor?
  2. Am I 18 years old or older?
  3. Do I have a smartphone and feel comfortable using mobile apps?
  4. Do I have rhinosinusitis on both sides of my nose/face, not just one side?
  5. I haven't been diagnosed with cancer or specific growths (inverted papilloma) in my nose/sinuses.
Answer every question to see your result.

What does participation involve?

If you decide to take part, you'll mainly be using a mobile app on your smartphone to share information. This will involve answering questions about your chronic rhinosinusitis, how you're feeling, and potentially how your treatment is working. This information will be collected over time, so it's an ongoing process rather than a one-off visit.

There are no specific study medications involved, as this study is observing people's experiences with their usual care. The total duration of your involvement isn't fixed, as it's a long-term registry, meaning data will be collected over an extended period to track changes and outcomes.

Potential risks and benefits

The main benefit of taking part is contributing to a better understanding of chronic rhinosinusitis, which could lead to improved treatments and care for others in the future. As this is an observational study using an app, the risks are very low; there are no experimental treatments or procedures. Your information will be kept private and anonymised. You are always free to stop participating at any time without giving a reason, and this will not affect your medical care.

Locations (13)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.
  • Graz University Hospital
    Verified postcode
    Graz, Austria· Recruiting
  • University Hospital Vienna
    Verified postcode
    Vienna, Austria· Recruiting
  • UCL Saint-Luc
    Verified postcode
    Brussels, Belgium· Recruiting
  • UZ Ghent
    Verified postcode
    Ghent, Belgium· Recruiting
  • UZ Leuven
    Verified postcode
    Leuven, Belgium· Recruiting
  • Odense University Hospital
    Verified postcode
    Odense, Denmark· Recruiting
  • Helsinki University Hospital
    Verified postcode
    Helsinki, Finland· Not yet recruiting
  • CHU Lille
    Verified postcode
    Lille, France· Recruiting
  • Dusseldorf University Clinic
    Verified postcode
    Düsseldorf, Germany· Recruiting
  • Policlinico Umberto I
    Verified postcode
    Rome, Italy· Recruiting
  • UMC Amsterdam
    Verified postcode
    Amsterdam, Netherlands· Recruiting
  • Hospital Clinic de Barcelona
    Verified postcode
    Barcelona, Spain· Recruiting

Common questions

What is chronic rhinosinusitis?

It's a long-lasting condition where the lining of your nose and sinuses becomes inflamed, causing symptoms like a blocked nose, pain, and loss of smell for many weeks or months.

Will I have to take new medicine?

No, this study doesn't involve giving you new medicines. It's about looking at your condition and how your existing treatments are working.

What is a 'biologic therapy'?

These are newer, more targeted medicines for certain conditions. The study wants to see who might benefit from them and how well they work in real life.

Will my information be kept private?

Yes, your information will be stored securely and made anonymous (pseudonymised), meaning your name won't be linked directly to your data.

How long will I be in the study?

This is a long-term study that collects information over time to track changes. There isn't a fixed end date for your participation, but you can leave at any time.

How to find out more

Sven F Seys, PhD

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

Interested in taking part?

Register your interest

Share your details and the research team for "Real-Life Chronic Rhinosinusitis Outcome Registry…" will contact you if you may be eligible. Always speak to your GP before agreeing to take part.

Discussion

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