Severe Asthma Registry??

[Pipsqueak77]

Hi All

I have recently been asked for permission to have my details entered onto a Severe Asthma Registry.

I have given the ok but have never heard of such a registry before.

Is anyone else on this register? And if so have you ever had any feed back/useful/helpful info from it?

Many thanks!

Take care 😊👍

[EmmaF91 Community Ambassador]

Yup. I’m on the register. Never had anything from it but I think it helps with research and statistics into severe asthma (internationally). I also suspect that a lot of the initial list for shielding asthmatics came from it as it’s a quick and easy way to identify a large group of severe asthmatics in the country.

Hope that explains what it is

[Lysistrata Administrator Community Ambassador]

I was also asked by my consultant if he could put me on. I think they're trying to get everyone on it who is being assessed for biologics and/or being considered for/having bronchial thermoplasty (my consultant was considering thermoplasty at the time but has dropped the idea now; however presumably I'm still on the register).

Like Emma says I think they like to get a better sense of the variety in/characteristics of severe asthmatics (eg things like eosinophil count, lung function etc and how they relate to each other). There's certainly a lot more they could learn, especially about those of us at the weirder side of things.

[Pipsqueak77 in reply to Lysistrata]

Hi Both

Yes.. thanks for the info.😊

It seems like a good idea then - as you say I guess the more info they have the better.

I’m sure it was helpful for compiling the shielding list - that makes sense too.

I would like to hear about some more in the way of treatments/potential research but we will see 🤷‍♂️.

Many thanks

Take care 👍😊

[Denae011]

Hi I’m also on that register.

[Emzy78]

I’ve never heard of it.

[Alliecat]

Is that only in England?

[Pipsqueak77 in reply to Alliecat]

Hi

I’m sorry! I really don’t know...

Tho I get the impression it is the whole of the UK.

Someone with more knowledge than me might have a better idea.

I had never heard of it myself..

Take care 😊

[Lysistrata Administrator Community Ambassador in reply to Pipsqueak77]

Yes a lot of countries have them and have published research based on data from them (as have we, from a quick search just now). I found some information estimating how many people have my weird subtype of asthma from the Belgian registry (their total population is similar to ours, though unsure how many asthmatics and how good they are at entering people on the register).

They are also developing an international severe asthma registry it seems, from the search I did just now.

[Pipsqueak77 in reply to Lysistrata]

Hi

That’s quite interesting..!

Never thought there was so much interest in severe asthma.

But it is good that they are pooling data.

Thanks😊👍

[Js706 in reply to Alliecat]

It’s for the UK 😊 and a lot of other countries around the world will have their own version

[Larrythelathe]

I am on it. Helps with research. It was a requirement for the drug trial I am on.

[redstar9]

I have just been put on the register too. I think it is for research stats.