Warning To Patients: No One Actually Vets Clinical Trials Listed In Government Database

Image courtesy of Juliana Thomas for International AIDS Vaccine Initiative

When you have an impossible medical problem or don’t like the treatment solutions available to you, it makes sense to turn to the very latest treatments, including those so new that they’re still in clinical trials. The problem is that the biggest listing of clinical trials simply shares the info without vetting it, and patients who don’t know better could have to pay huge amounts of money.

The Washington Post used the example of a patient seeking stem cell treatment for the cartilage in her knees who looked into a promising clinical trial.

The problem? It didn’t spell out that participants had to pay to take part. They weren’t paying for the treatment, but for “associated costs,” a total of $14,000. A helpful screener at the stem cell company suggested that she use crowdfunding, specifically naming the site GoFundMe, to raise the money from friends and relatives.

As a retired hospital administrator, she knew better and questioned the price tag. Clinical trials normally don’t charge patients, and sometimes pay them to compensate for their time and the potential risks of taking part.

The company told the Post that it wasn’t actually charging people to enroll in clinical trials: it was running a clinical trial on people who had paid for and received treatment.

Still, the retired administrator questioned why this was listed as a regular clinical trial in the National Institutes of Health’s ClinicalTrials.gov database, which users assume is a place to find trials for their particular condition.

“Most people don’t realize that creeping into that database are some trials whose main goal is to generate profit,” a medical professor who studies the state of stem cell research told the Post.

Want to enroll in a clinical trial? NIH database is huge — but lacks a few key details [Washington Post]

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