Advocate for Access to Medical Data

Earlier this month, a number of Democratic senators called for the existing database to be expanded or replaced. They said pharmaceutical companies should be forced to register details about the opening of a drug trial and its results. Some industry officials, however, have said that such a requirement would compromise proprietary information.

The American Medical Association has also backed the drive for mandatory disclosure of clinical trials, voicing concerns that drug companies tend to flag positive test findings while playing down those with negative or inconclusive results.

Over the last two years, about 250 drug companies have registered with ClinicalTrials.gov, putting about 1,300 trials on the site, McCray said. She said she believes mandatory registration would lead to more effective research.

"It would go very far in ensuring transparency in the whole clinical research enterprise," McCray said. "If you knew that a particular trial had taken place, you could track down what happened, and you could do better meta-analyses and systematic reviews."

"I believe patients have the right to know what's going on, because after all they have volunteered to participate in such an experiment and have perhaps put themselves at risk."

McCray says she finds it hard to understand industry concerns about the possible loss of proprietary information.

"When a patient participates in a clinical trial, that information is out there," she said. "The level of information we put into our database is really, if you think about it, like an abstract of a research protocol. It is relatively minimal information in the overall protocol."

She points to cases such as that of her neighbor, Ellen Berty, to demonstrate how ClinicalTrials.gov is making a difference in the lives of those who may once have struggled to find reliable and concise information on medical trials.

"Before the site was established," McCray said, "you really had to know someone who knew someone to find out about a clinical trial, because the information was just scattered all over."