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.
â whereas stiffness, fatigue, enthesitis (indicated by foot problems, tendon and ligament pain), and back pain were more common among respondents with longer time to diagnosisâ
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!
Thatâs a really nice little piece of research. Iâm just a bit put out that they used CreakyJoints and not us as a source of research subjects.
S
CreakyJoints do have a specific âpatient-centered research registryâ, ArthritisPower, so Iâm 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 isnât a representative sample of PsA patients, although itâs probably the stereotypical PsA patient profile.
Is there anything about this disease that isnât interesting?
Okay I shall demonstrate my cynical side - I was in that realm once Academic, NIH, and private industry.
For âresearchâ as opposed to âtrialsâ 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 âThese findings indicate blah blah blah meaning we really donât know chitâ and âfurther research (send us money) is warranted.â An organization such as Creaky Joints basically rewrites it in plain language for their members but certainly leaves open the âsend us moneyâ 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.
âPatient Centered Reseachâ 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 donât like. Benâs Friends members own and control their data (we have no registry) as they should. Patients must be compensated for contributing their data (Iâm 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 ainât 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, CROâs (contract Research organizations) are paid from a few hundred to several thousandâs 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 doesnât cut it.
Academic research is some different but it is funded by someone, because they are not utilizing CROâs 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 donâ stay around Creaky Joints long. I didnât 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, thatâs just about the last they hear until its time to âupdateâ 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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Yes, thatâs about what I expected tnt to say, and Iâll admit that Iâve heard some of that (wink) before.
I had a good poke 'round the CreakyJoints site and what struck me was the 
glitz and the loooong list of prestigious companies and organizations (read: outfits with $$$) that âcooperateâ 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, thatâs a rarity.
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Very similar to the âVersus Arthritisâ 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 âarthritisâ thatâs for sure.
Wow, this has been enlightening! And all along I thought âCreaky-Jointsâ was a clever name for a cannabis outlet! My respect and gratitude for the integrity of those who run Benâs 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?