Trial Watching

A new federal law will expand an existing federal website to require the posting of all information about all clinical trials regarding drugs and devices, even if researchers choose not to have the results published, as has been the case with some high-profile recent cases in which negative outcomes appear to have been suppressed by manufacturers with the stalling tactic that additional years were needed to analyze the data in the medical study properly.

The current version of www.clinicaltrials.gov seems to be aimed at patients with disorders who might be seeking experimental treatment in a particular geographic region. The model search they show reads "Heart Attack AND Los Angeles," as though the city is a contributing factor.

I tested the site's search engine out, but soon discovered that there aren't any trials for the one bonafide disorder I have: "superior oblique tendon sheath syndrome," otherwise known a "Brown's syndrome," a form of "lazy eye" that requires me to wear a prism in my glasses and for which I've been prescribed treatments from surgery to eye exercises. I did discover that there were clinical trials more generally for strabismus in Iran, Germany, and the Netherlands, since the database includes information from 153 different countries.

Although the website design was pretty visually austere and used tabs, which many visitors will miss, I thought that the no-nonsense functionality of the site was almost as good as the ideal of transparency that it represents. It's not a super-sexy example of information aesthetics, but the page came with "Basic Search," "Advanced Search," "Studies by Topic," and "Studies on a Map." Unfortunately, this final category has limited its granularity to the level of individual states, which for those of us who live in large states seems to defy the logic of patient transportation, since it is a long way to drive from San Diego to Humboldt County. To its credit, users can also set up RSS feeds, so they can keep up-to-date on research for their particular condition, which -- if fast-changing treatment paradigms are involved -- could prove to be very useful.