Kati
Patient in training
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We needed that kind of study 20 years ago.I agree that you cannot just expect GPs to find patients and leave it at that. That is not the idea. The idea is that you have a geographic area where all GP practices agree to become involved in a demographic study that involves detailed education of staff and formalised referral protocols. You then have an expert team of validators for every case offered. This sort of thing was used for the big cardiovascular risk studies and has been done for rheumatoid arthritis in Norfolk. You have to remember that secondary and tertiary referral centres are only as good as the primary care referrals in the first place - the more specialist you get the more bias you can get. 'Usual' or well known clinics will have a grossly biased referral pattern based on all sorts of things like whether patients can pay or travel, whether the clinicians are popular with certain types of patient - it is endless. We will never get reliable data from studying populations in tertiary centres. For a start there are no relevant control populations. The people who do epidemiological studies properly just don't touch that sort of cohort with a barge pole. Nobody knows whether samples are from patients or controls right up to the point of publishing and often not even after - everything is analysed in a blind coded form so that you can do more studies without having broken codes. We need to raise the level of research to this sort of quality of methodology.
And this kind of study with proposed methodology would probably take 3 years to implement, 5 years to publication. With the existence of such cheap and seemingly quick tests, you'd think it would be easier.
i could swear that such study in the HIV population is already under way.
Sorry don't mind me I'm really nervous, I am seeing a new specialist in a couple of hours.