How do people with long term lung conditions find out about chances to be involved in developing research questions or becoming participants in research?
Is anyone in the UK signed up to this yet? bepartofresearch.nihr.ac.uk/
We seemt o eb getting more research funding in lung health but still need help getting more questions developed and also the quicker we recruit into studies the better !
definitely worth asking to be referred to a bronchiectasis specialist. Lots of things we do in clinic that are not easily done in an asthma clinic. ALUK have an excellent bronchiectasis info book and we developed a hopefully useful website too with Newcastle University bronchiectasis.me
Common grumbles are not getting 14 days of abx for infections (national guidelines) and not having sputum samples submitted often enough
Take care !
Thank you for the information. My main grumble is the inequality between our cf brothers and sisters and ncfb when it comes to self administering home IVs. CF patients, quite rightly have Everything delivered and Meds that can be pre-filled, along with fridge for pre-filled heparin, whilst ncfb patients have to get everything home themselves, whilst feeling unwell - syringes,needles, wipes, antibiotics, sharpes box, water for injection and A lot of Heparin to draw up if you have a port. Only recently we have prefilled Posiflushes. Difficult if you don’t have your own transport. Funding I expect but it’s not right.
I filled in a questionairre about a research programme last year (can't remember which one now) and got a reply to say that I wasn't eligble. Didn't get that impression when I read about it otherwise I wouln't have bothered.
I’m signed up to bepartofresearch but unfortunately I’ve not yet been eligible for any studies which are relevant to me. Obviously the eligibility criteria are quite strict. But they send a newsletter now & again which highlights any new studies, so I always check.
Just had a look at Newcastle’s website - very helpful
We are very hopeful there will be a number of new research studies in bronchiectasis across the UK in 2023-2024. Thanks to everyone who helped with BronchUK (bronch.ac.uk and EMBARC bronchiectasis.eu). These observational studies will start telling us more about what patients and what bugs etc are linked with being more / less stable... They will then help us design interventions specific to Bronchiectasis. There are a number of anti flu/ otehr virus studies coming that would be relevant to bronchiectasis too
Ooh this is good news. There seem to have been very few new bronch therapies in recent years. I’m especially keen on any new mucolytics - carbocisteine doesn’t help many bronchs & hypertonic saline is effective but irritates the lungs so. I was told there was a trial involving oligosaccharides (hope I’ve got the right word!) but never heard more about it.
It’s frustrating to many of us that we’re often the poor relations to cf. Obviously no one begrudges the funding for that horrible illness but many bronchs have multiple co-morbidities & we often feel overlooked. Glad we might now get some attention!
What we also desperately need is an alternative oral antibiotic for pseudomonas, then those of us who can’t tolerate cipro won’t need IVs every time.
You know this, of course - I’m just saying 😊
paper published suggesting hypertonic saline plus hyaluronate was easier to tolerate- interested to know if anyone in UK has tried it?
Couldn’t agree more e. Some interesting comments from the time inhaled cipro was knocked back bt the FDA, when we still had our resident nemesis. I always found Hanne to be so in the know about relevant research, but she has sadly left the site. Our loss. Xx
healthunlocked.com/asthmalu...
I hadn’t heard all this controversy about inhaled cipro - I knew it was talked about a few years ago but just presumed the trials had failed or something. Omg it would be such a boon! I’m so disappointed that nothing’s come of it. It’s such an obvious solution for those who can’t tolerate it systemically (if that’s the right word!)
Thanks for that link. Very, er, interesting…! 🤔
Go to copdfoundation.org -- they have a directory of all current trials in the U.S. 
I’m mainly treated at addenbrookes. It’s rare to go to my vasculitis clinic and not to be asked to participate in a trial if you haven’t been on one recently. I’m currently on one trialling Sotrovimab as a prophylactic treatment against Covid for the immune compromised. Check out the posters in your clinic I’ve seen them recruiting in my local hospital. You can also search online but they tend to be centralised around certain hospitals.
I am on various registers and am actively involved at the NIHR. In fact, it was during participation in a study looking at heart health that my PF was observed.
I was referred directly, by the researchers for a High Res focused CT (as the initial CT was focusing on my heart) and a request to my GP to make a respiratory referral.
I felt extremely well cared for, throughout the research process (a further 4 years left to run), have no qualms about doing other things.
Remote Monitoring Research
Ifs & Buts of Un-diagnosed Lung Disease In Women 
More funding for mesothelioma research!
