Register Schweres Asthma - German Asthma Net e.V.
This study, called the German Asthma Net, is creating a registry (a special database) for people with severe asthma in Germany. The main goal is to understand severe asthma better, improve the care patients receive, and increase knowledge about the condition. Doctors realised there wasn't enough reliable information on why some people get severe asthma, how common it is, or the best ways to treat it. By bringing together information from many clinics and practices, this study hopes to build a more complete picture. Participants will share health details, like symptoms, lung function, and treatments, over 15 years. This information is kept private and separate from personal details, helping to find better ways to diagnose and treat severe asthma in the future.
At a glance
What is this study about?
Imagine a big, secure notebook where doctors record important information about people with severe asthma across Germany. That's essentially what the German Asthma Net is doing. Severe asthma can be really tough to live with, and doctors often find it hard to get a full picture because there aren't many patients with this specific condition in any single clinic.
This project was set up because experts realised they didn't have enough clear information about severe asthma. For example, they want to understand how many people have it, why some people get it, and what treatments work best for different individuals. By collecting information from lots of people in different hospitals and clinics, they hope to get a much clearer understanding. This bigger picture can then help them find better ways to diagnose and treat severe asthma in the future, making life easier for patients.
This study isn't testing new medicines or treatments; instead, it's about carefully observing what's already happening. Doctors will record details about your asthma, your general health, and the medicines you're taking. This information helps paint a detailed picture of what severe asthma looks like in real life. All your personal information is kept very private and separate from your health details, so your privacy is protected.
Key takeaways
- It's a study collecting information about severe asthma in Germany.
- Aims to understand severe asthma better and improve care.
- Participants will share health details yearly for 15 years.
- No new medicines or treatments are involved.
- Your privacy is protected.
- Helps doctors develop better ways to treat severe asthma in the future.
Who may be eligible?
This study is looking for children, teenagers, and adults who have been diagnosed with severe asthma by a doctor. For younger people (aged 6-18), it means their asthma symptoms haven't been well controlled over the last year, even though they've been taking regular, high doses of asthma medication. Doctors would also have checked that other breathing problems aren't causing your symptoms.
For everyone, whether child or adult, you would need to be taking a high level of asthma treatment already. This could be high doses of inhaled steroids, or a combination of different asthma medicines. Despite this treatment, you would still be experiencing significant asthma symptoms, like frequent wheezing, needing your reliever inhaler often, or waking up at night because of your asthma. Your lung function might also be low.
There are also some reasons why you might not be able to join. For example, if you have other serious lung conditions like cystic fibrosis, or other major ongoing health problems, you probably wouldn't be able to take part. This helps make sure the study focuses clearly on understanding severe asthma.
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.
- Have you been diagnosed with severe asthma by a doctor?
- Are you between 6 and any age?
- Are your asthma symptoms still troublesome, even with significant regular treatments?
- Have other breathing problems that could mimic asthma been ruled out by your doctor?
- Can you commit to yearly check-ins for information sharing?
What does participation involve?
If you join this study, the doctors will record various details about your health. This includes things like your gender and date of birth, your asthma diagnosis, and the treatments you're currently using. They will also note down your lung function test results, blood test results (like your IgE levels and eosinophil count), how well your asthma is controlled (e.g., how often you have symptoms or need your rescue inhaler), and if you smoke.
This information will first be collected when you start the study. After that, you'll have a follow-up visit once a year where this information will be updated. This will continue for a total of 15 years. You will be given a special ID number to protect your privacy, meaning your personal details are kept separate from your health information.
Potential risks and benefits
Locations (45)
- Kardiologische und fachinternistische ÜBAG Dr. Sandrock und PartnerVerified postcodeAltdorf, Germany· Recruiting
- Universitätsklinikum Augsburg Kinderpulmologie und -allergologieVerified postcodeAugsburg, Germany· Active not recruiting
- Praxis Dr. GrünVerified postcodeBad Windsheim, Germany· Recruiting
- CIMS Studienzentrum BambergVerified postcodeBamberg, Germany· Recruiting
- Lungenpraxis TegelVerified postcodeBerlin, Germany· Recruiting
- Evangelisches Klinikum Bethel v. Bodelschwinghsche Stiftungen BethelVerified postcodeBielefeld, Germany· Recruiting
- Helios Lungen- und Allergiezentrum BonnVerified postcodeBonn, Germany· Recruiting
- Universitätsnedizin BonnVerified postcodeBonn, Germany· Recruiting
- Zentrum für Kinderheilkunde, Klinik und Poliklinik für Allgemeine Pädiatrie, AllergieabteilungVerified postcodeBonn, Germany· Active not recruiting
- Lungenpraxis Medicum BöblingenVerified postcodeBöblingen, Germany· Recruiting
- Prof.-Hess-Kinderklinik Bremen-MitteVerified postcodeBremen, Germany· Recruiting
- MECS CottbusVerified postcodeCottbus, Germany· Recruiting
Common questions
What is a 'registry'?
A registry is like a safe database where doctors collect important information about a specific health condition, in this case, severe asthma, to learn more about it.
Will I have to take new medicine?
No, this study isn't about new medicines. It's about collecting information on how severe asthma affects people and what treatments they are already using.
How long will I be in the study?
If you join, doctors will update your information once a year for 15 years.
Will my personal details be kept private?
Yes, your personal details are stored separately from your health information and you'll be given a special ID number to protect your privacy.
What is the main goal of the study?
The main goal is to understand severe asthma better, improve patient care, and gather reliable information that doctors currently don't have enough of.
How to find out more
Stephanie Korn, Prof.
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
Community discussion
Powered by our forum at community.patient.info. Please be respectful — this is not medical advice.