Trial Registries Proliferate: Is Anyone Benefiting?
The issue of clinical trial result transparency continues to evolve at a rapid pace. During the past few years, almost every stakeholder has taken action in some form. This should be a positive development because there is a lot attention being focused on a very important issue. But at the end of the day, have we made a difference? Has the noise that this caused just confused the issue more for patients and physicians, or made finding trial information easier and more useful?
The fact is patients today have to navigate a world of disparate databases with listings written in difficult medical terminology and formatted in different ways in order to find trial information. The creation of some clinical trial search engines might help the patient find trials faster, but the search results simply link you to the different registries so the same problem remains. The industry has spent nearly $100 million during the past 24 months to respond to the outcry from advocacy groups, government agencies and professional associations to be more transparent with information about their active and completed clinical trials. But, are we any better off as a result?
Two recent surveys conducted by Thomson CenterWatch have found the following interesting facts which provide some insight into this question:
- In 1993, 65% of clinical trial volunteers were referred to a trial by a primary care physician or nurse. Today, as many as 75% self-refer to a trial using available informational resources such as the Internet.
- A survey of nearly 800 study volunteers who had completed a clinical trial from start to finish found that 25% first were informed about the trial through the Internet, while 27% found out about the trial through other media (i.e. radio, television, newspaper).
- Sixty percent of physicians surveyed have referred patients to clinical trials. Those that have not referred patients into trials cite lack of information about treatments as the top hindrance to participation. Just 7% of physicians said they feared losing the patient.
So it appears that making this information available online is having some positive effect on educating patients, while physicians might not be receiving an immediate benefit from its availability. The landscape only seems to be getting cloudier as we move forward. The following is a list of trial registries recently approved by the International Committee of Medical Journal Editors:
None of the above sites, outside of ClinicalTrials.gov is ranked in the top 100,000 of all web sites in the world in terms of traffic. Yet, these are only a few of the sites that actually list trials, or provide a trial registry search. Here are some others that have been around for some time.
www.centerwatch.com (the publisher of this weblog)
And some recent additions:
www.ifpma.org (a global trial registry search engine)
www.searchclinicaltrials.org (trial registry search engine)
http://www.amia.org/gtb/ (the upcoming Global Clinical Trial Bank)
In the U.S., a number of states are planning their own registries, too. Clearly, it's flat out registry proliferation.
This is similar to of sitting down at the television trying to find something interesting to watch on one of 500 cable channels and instead spending two hours "surfing" for something, anything, entertaining. Where will it all end?
Opinions differ. We'd like to hear your comments on what is clearly becoming an issue of great significance.