Just a thought. So many permutations of our symptoms. No one is making sense of it all. Would setting up a site we can all contribute to, naming our symptoms versus what we are diagnosed with help or hinder?
I am IT illiterate. Could it be done? Can just anyone do it?
Contributors would have to be legit of course.
What d'ya think?
You wont be shy in letting me know!
Regards
⚽️
Isn't that we are doing here already.
Well Chapter, we certainly commiserate with each other over similar pains and symptoms or different replies to similar questions.
Our sharing helps us, but the amount of knowledge here just goes off into the ether. I would like to see in black and white what we are saying.
Attested experience. Any trend in Fybro being missed? Or Fibro not being fybro at all, but part of something else? Who do certain drugs work for? Is there a trail of breadcrumbs no one has followed to a new destination? Maybe I am cramming in too much but someone could cut it up and show us a feasible way to go? No?
Even a cruedly gathered mass of info might show some glaring thing no researcher has looked at before.
I have asked Paul.
Watch this space
Thanks for your supportive comments
⚽️
Hi Footygirl
How did it go with the Specialist you saw?. Good I hope. X
Patient databases or registries are becoming more common and I certainly know of a couple for vasculitis for example; the Rudy study and Vasculitis Patient Powered Network. It would be interesting to hear if Paul from Lupus UK knows of any Lupus specific patient registry.
Hi RichardE,
One of the largest registers we have in the UK is the UK JSLE Cohort study for people who are diagnosed with lupus as children. There are over 550 people in this registry at present. Soon multiple centres in the UK will be recruiting for MASTERPLANs which is a multi-centre research study aiming to stratify and individualise treatment for lupus patients.
Excellent, thanks Paul. That's good to hear.
Yes, please do ask paul about this, footy 👌👏🌟🍀
Here, here, Footygirl! Been wondering about this for some time....
Hi
Paul says that Lupus UK do this. A recent once in five year gathering of info is due to be published soon. We are in good hands.
⚽️
Have worked in media and tech for 15 years. More than happy to collaborate. Some very easy ways we could get started. I understand what you're saying, too. Basically aggregate the info in such a way that we have actual stats. I'm 100% down to help, as I think the data pulled from thousands of real people far surpasses that of general medical knowledge. So many insights they need, as well as the Lupus foundations. See my latest post/rant on what Lupus.org just put out.
DM me anytime.
One thing to mention: all data is anonymous, so it should not be a patient database so much as a symptom database. Also, you do not need to be an admin, medical professional, organization or the like to do this. I say this having done massive, global user research for years. 
Why can't I learn to pace myself 😪
Planning pregnancy: questions to ask
We want to hear from our LUPUS UK members!
Where to start, who to see?
Antibody Test results
