Recent information on PsA diagnosis in the US

The method of recruiting subjects for this study is very interesting indeed:

Seenie

Also really interesting is that there is a phenotype that is more likely to have misdiagnosis / delayed diagnosis.

“ whereas stiffness, fatigue, enthesitis (indicated by foot problems, tendon and ligament pain), and back pain were more common among respondents with longer time to diagnosis”

I think many of us probably knew that those with red, hot, visibly swollen joints tend to get diagnosed a lot faster than those without (and who often have those tendon and ligament problems), so it is good to finally see some acknowledgment of this in a formal study.

I saw that and found it interersting too: of course that description described me perfectly!

That’s a really nice little piece of research. I’m just a bit put out that they used CreakyJoints and not us as a source of research subjects.

S

CreakyJoints do have a specific “patient-centered research registry”, ArthritisPower, so I’m guessing that just gave them a database of people who already had indicated willingness to participate, so recruitment is quick and easy. Interestingly enough, of the research shown on creakyjoints, it seems likely it is the same 200 people (mostly women, around age 51) responding through the registry, so actually a lot of that patient-centred research may not be very representative.

An interesting observation, Jen. Yes a registry like that would make it quick and easy for researchers to get a cohort together and get started.

@tntlamb would probably have something similar to say. Mostly women around age 51 isn’t a representative sample of PsA patients, although it’s probably the stereotypical PsA patient profile.

Is there anything about this disease that isn’t interesting?

Okay I shall demonstrate my cynical side - I was in that realm once Academic, NIH, and private industry.

For “research” as opposed to “trials” a very tight cohort is preferable. If it is tight enough as few as 17 members can make a statistically testable finding (testing data is its own thing). It will be accepted for publication. If you read one of these papers, You will always something to the effect of “These findings indicate blah blah blah meaning we really don’t know chit” and “further research (send us money) is warranted.” An organization such as Creaky Joints basically rewrites it in plain language for their members but certainly leaves open the “send us money” Part.

Academic research is not quite so pure as one would think. Academic researchers may have a grant/contract but more often than not are sending up trial balloons looking for funding somewhere from someone.

“Patient Centered Reseach” is a popular term these days what it really is, is a euphemism for give us your Data for free (to organization) and we can participate in research (meaning we (the organization) will then sell your data for a huge profit to whoever is willing to pay us for it so we can (the organization staff) can attend conferences at high end hotels/resorts around the world (a euphemism for buying and selling patient data) and draw huge salaries.

Why do they not come to us? Some do but we have some rules many don’t like. Ben’s Friends members own and control their data (we have no registry) as they should. Patients must be compensated for contributing their data (I’m the judge of what compensation is before they are made aware of the project) We sell no contact information to anyone ever. IF the project is on the up and up, we will for a fee (and it ain’t cheap) make the project known to our effected members and they can determine if the want to be involved or not. Depending on the project, CRO’s (contract Research organizations) are paid from a few hundred to several thousand’s of dollars per head that they recruit. This includes academicians. They can well afford to pay you for your time and efforts. A drawing for a gift card doesn’t cut it.

Academic research is some different but it is funded by someone, because they are not utilizing CRO’s their per patient expense is lower. We consider those projects as well but only after interviewing the lead researcher and certifying the study through the institutions research committee. We are peer to peer support and self advocacy ONLY not a front for a Data Mill as some advocacy and support sites are.

It is about 200 or so. Folks don’ stay around Creaky Joints long. I didn’t even make it through the membership profile… I have and I know Seenie has looked at some of these organizations and immediately smelled a rat. Its what YOU can do for them NOT what they can do for you. Most people find out once they join fill out the questionnaire, that’s just about the last they hear until its time to “update” sadly far too many patients give up and quit visiting sites because they get nothing (or very little) in return. Its sad.

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:blush: Yes, that’s about what I expected tnt to say, and I’ll admit that I’ve heard some of that (wink) before.

I had a good poke 'round the CreakyJoints site and what struck me was the :sparkles: glitz :sparkles: and the loooong list of prestigious companies and organizations (read: outfits with $$$) that “cooperate” in some fashion with CreakyJoints. The mind boggles.

There is nothing simple in this business, is there? Except maybe the genuine social and emotional support which we dispense to our members freely and without condition. In this day and age, that’s a rarity.

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Very similar to the ‘Versus Arthritis’ organisation in the UK sadly. Completely disinterested in anything but their own agenda which is is their own ability to attract funding for themselves not the poor sods suffering an ‘arthritis’ that’s for sure.

Wow, this has been enlightening! And all along I thought “Creaky-Joints” was a clever name for a cannabis outlet! My respect and gratitude for the integrity of those who run Ben’s Friends is at an all time high! Hidden agendas make skeptics and trust is essential when dealing with such significant matters of health.

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Amos, you made me laugh out loud! Too funny. But come to think of it, a very clever idea! Only in Canada you say?