Really good article. Quite technical but worth a read!
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Thanks @sbender. I think one of the things I find most amazing is that they have been trying to come to an agreement on what aspects to use to measure disease for 15 years! Most of the measures they have used historically would miss out a significant part of my primary troublesome issues (eg axial disease). Now @Seenie, @tntlamb if we wanted to make a difference to the research, having a patient-centred measurement standard (even if they are using it alongside their research standard) would be a marvellous thing to aspire to (though I do suspect right about now my pigs are growing wings 
).
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Put a cover over your pig pen!!! Patient centered measurement you say???
Funny you should say that. ESPECIALLY todayâŚ(its been a long one with more to go) What you are talking about is called natural history. More importantlly you are talking about natural history based on patient interaction. About a year ago one of our communities was the key source of a project between Yale Univesity, Stanford, and thebetterscience.org consortium that developed a new decision matrix for a neurosurgery procedure(also got a PhD for the lead reasearcher and a very prestigous neurosurgery appaointment/fellowship to go with his MD)
Largely because of that project, Benâs friends has the opportunity to recieve a very prestigous (and large) grant to develop a natural history software project to develop natural history based on PATIENT input rather than old differential diagnostic techniques (iffy at their best) Its open science so could be used by any researcher for any of 6000 rare diseases when completed.
There is a lot more including a patient directed registry, genetics and a bit more. Its not an over statement to say the project w have been working on for nearly 2 years (and we have been told so by numerous outside âexpertsâ) could change the approach to treatment and diagnoses of rare disease not to mention speeding treatment researchâŚ
If Seenie and I have been a bit distant, its because we are polishing and tweaking the final grant proposal.
We have been screen sharing night and day to point our families are wondering if sumpins goinâ on LOL. It should be in the can tomorrow. When patient helping Patient as BF has been doing for almost 15 years becomes patients directed open science for research THATS something to talk about.
The project WILL be completed irregardless of this grant or not but just a bit slower⌠So please keep us in your thoughts and fingers crossed⌠I was on the FDA committee that that ultimatley required natural history for all drug trials to define endpoints. This is an extension of that. I am almost Giddy at the thought. As you know, Iâm not ever giddy excep for the mayfly hatch (fishing)
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What a truly wonderful project to hear about, I will keep everything crossed for this grant to support it on its way. And look for a pig pen lid!! 
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