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Webwatch
January 2007
Clinical trials
As always, on the internet one must be very careful. Who publishes information is of significance, what is their agenda, their reason for taking the trouble to publish. This mirrors the need for double-blind clinical trials, the attempt at eliminating bias, intended or otherwise.
The US based National Institutes of Health (NIH) have an interesting page on clinical trials at www.clinicaltrials.gov. When I put ITP into the "Search Clinical Trials" box, it gave details of 16 trials but like many web searches, not all relate to the ITP of interest to us. There are links to Understanding Clinical Trials and a Glossary of terms, all with clear explanations that are not too technical. Other links tell us the NIH is a federal Government agency of the US Government, their home page is at www.nih.gov.
A UK based site, entitled Clinical Trials Tool Kit, has a link that describes the regulation of clinical trials in the UK, this is on www.ct-toolkit.ac.uk. Right on the first page is a link to the actual legislation, Statutory Instrument 2004 No. 1031, The Medicines for Human Use (Clinical Trials) Regulations 2004. The FAQs page gives a set of interesting links covering the regulation of clinical trials. On the bottom of the front page it says "The site has been developed by the UK Medical Research Council and Department of Health for use in all publicly funded academic trials."
On the Tool Kit site there is a link to http://www.nelh.nhs.uk/clinicaltrials, an NHS site that provides general information about how clinical trials work. Following links from these official websites, leads to www.ctu.mrc.ac.uk, a site published by the The Medical Research Council who describe themselves as "a publicly-funded organisation dedicated to improving human health."
A commercial view of clinical trials can be seen on www.drugtrial.co.uk, they offer payment to volunteers, they say "you will receive no therapeutic (treatment) benefit from taking part". GlaxoSmithKline have a Clinical Trial Register page at ctr.gsk.co.uk/welcome.asp and Trials4us are looking for more volunteers at www.trials4us.co.uk. It must be stressed that the ITP Support Association have no links with any commercial trials for payment.
The well respected BBC website has an entry on news.bbc.co.uk/1/hi/health/medical_notes/4872918.stm,
A view of clinical trials published by a charity can be found at www.cancerhelp.org.uk/help/default.asp?page=51 Although cancer has no direct relevance to ITP, their approach is subtly different from the official pages above.
For something completely different, the most widely used Wiki on the net, Wikipedia, "the free encyclopedia" has an entry for clinical trials on en.wikipedia.org/wiki/Clinical_trial. What is perhaps not obvious is that Wikipedia is written by its users. In the past, books such as the Encyclopedia Britannica were written by teams of "experts", chosen for their knowledge of their subject and skill at writing. In contrast, anyone can register, free of charge, and start editing the pages of Wikipedia. The techie side of how to do it are a bit daunting but anyone can have a go. This sounds like a recipe for chaos and anarchy, a forum for nutters, free-wheelers and those with an axe to grind. The facts seem to run directly counter to expectation. Entries are generally well written, clear and seem at least, to be authoritative. The reason is that anyone who puts up contentious material will have it edited by others more interested in getting it right. As an experiment, I registered and wrote an entry on Great War trench maps (en.wikipedia.org/wiki/Trench_map on the off chance you may be interested to see it). No-one has argued with it yet! Knowing that Wikiedia is written by its users, perhaps everyone who reads the Platelet should put Idiopathic thrombocytopenic purpura into the little search box on the left of the main Wikipedia page and see if they agree with what it says. If not, change it!
Happy surfing
Howard