Unless you or a family member has suffered a serious illness, it’s unlikely that you’ve run across the site ClinicalTrials.gov, run by the U.S. National Institutes of Health. Available since 2000 and enhanced by a 2007 law which requires more extensive reporting, this site contains a database of nearly 71,000 drug trials conducted by privately and publicly funded researchers in 50 states and 164 countries. The website gets 40 million page views per month and 50,000 visitors a day.
Using ClinicalTrials.gov easy-to-use search interface, you can type in a search such as “breast cancer AND Denver,” or “asthma AND Pittsburgh” and get a list of relevant drug trials that are underway or have been completed. Thanks to the 2007 law, over a three-year period this information is being expanded to include information about actual results from these trials as well. This will help patients ferret out drugs that may be showing negative side effects.
This is a great resource, but does it have legs? Yes and no. The website does provide a way to obtain the data via XML feed, which would allow savvy programmers to mash it up with other information. However, you have to wade through several layers of the website to find instructions about how to do this. There’s also a page for webcrawlers. There is no way, as far as I could tell, to get this information in other formats, such as tab delimited file. On the front page, there are no links to RSS feeds or social media sites, such as Facebook and Twitter.
Are there third parties out there that are taking this information, mashing it up, and making it better? Yes. TrialCheck at Cancertrialshelp.org, a nonprofit group, takes data from ClinicalTrials.gov and other sources and takes it a step further, by avoiding dense medical terminolgy and giving users the option of calling a clinical trial specialist at the American Cancer Society for more information about a particular trial. Visits to the website quadrupled in the last year, reports the Los Angeles Times.
Another intriguing idea was submitted to Netsquared.org last year–a graphic designer proposed taking data on breast cancer and mashing it up with other information to produce maps for patients where they could quickly find local support groups, treatment, screening centers and events.
On my own wish list would be to figure out a way to take these data and mash them up with information about lawmakers’ districts, to see what drug trials are going on where. We already know that the pharmaceutical industry gives big bucks to federal candidates and parties and spends copiously on lobbying. Would lawmaker X be more likely to vote against stricter drug safety regulation if he has a big drug company sponsored trial going on in his district? Would it help explain why lawmaker Y is getting a flood of contributions from executives working with a particular out-of-district company? The data offered at ClinicalTrials.gov could help answer these questions.