What do we want? How do we get there? Can you make it happen?

[gotumtum]

Soooooo IBD Huh...

We still don't know all the ins and outs of this thing that is IBD.

I thought I would start this thread in case someone reading this forum has the ability and money behind them to do big things. Really big things.

So what do we need to get this sorted - a cure obviously, but what are the smaller stepping stones to get there? What do we research? Who, where, what?

I know there are MAP studies and the Qu biologic trial. What else do we need?

To start this list...

#1 More information- Up to date information. Scientifically, mathematically accurate information.

A large study over various country/ethnicity/sex/age/diet... groups

Asking questions about age of and steps to diagnosis, clinical signs, diet, and diet changes, symptoms, medications failed, Type of IBD diagnosed with, or undiagnosed, location of disease, operations, recording blood and other test results and symptoms at the time, ...

I know that there is one of these possibly starting for kids? But have forgotten the name.

I know that this would probably take a massive amount of money, but just imagine how much a drug company could make from a patent for a crohns cure?

Or could some computer whizz put together a free online one (with some volunteers in the medical and statistical fields for accurate and useful findings) and have legit researchers contact them for the results?

What would need to be included? What sample size for real results?

Just a thread to throw around some big bold blue sky thinking in case some people who can make these things happen read it...

(and no I can't make it happen, sorry!)

And I wanted to put an Icon on here, but there wasn't one for Hope, which is also kind of what this thread is about.

 

[gotumtum]

So - Research study would need - to be ongoing - people need to be able to update their medication, symptoms,test results, surgeries etc to keep info current, and as IBD evolve over time.

Also site would need to be able to be used on computer, phone and tablet.

 

[Cross-stitch gal]

I guess, I don't quite understand what info you're hoping to obtain from us. I do know though, that there are many things that we as patients would love to have be solved/taken care of. There are times when this medical challenge has given me a lot to think about. I hope you'll be able to find the answers you/re looking for. :hug:

 

[7vNH]

One "New Thing" that needs to be leveraged more is PCR. A few years ago, it was too expensive. A few years before that, it was not invented! So almost everything we "know" about IBD was discovered without the benefit of the understanding of what is really going on in our gut micribiome.

You can start today by paying a $99 donation and sending in a sample to the american gut project (google it, since I don't want to break any rules here).

And another way to leverage PCR is to get your own genetic code analyzed...for free, possibly:23 and me discussion