While we’d all like to have straight-forward medical diagnoses with simple solutions, some of us get thrown curve balls: a rare disease that strikes fewer than 1 in 10,000, or a life-threatening illness with no known cure. In these cases, entering a clinical trial may make sense for patients.
Finding the appropriate trial to enter, however, can be tough, even when a doctor is doing the searching, since the government’s clinicaltrials.gov website can be difficult to navigate.
“You have to be pretty sophisticated when searching this site since drugs are often listed by their original names, which are a bunch of letters and numbers,’’ said Dr. David Ryan, chief of hematology and oncology at Massachusetts General Hospital.
Now, though, there’s a new website called myclinicaltriallocator.com. It’s designed to be more user-friendly and is the brain-child of Dr. Bruce Moskowitz, a Florida-based internist. Folks at Mass. General, Brigham and Women’s Hospital, and Dana-Farber Cancer Institute contributed to its development, along with people at 40 other institutions.
“The idea for [the new website] came as I was sitting with a patient who needed a clinical trial for early Parkinson’s disease in New York. The clinicaltrials.gov site listed a trial with what turned out to be the wrong contact information, and it was listed as open when it was closed,’’ wrote Moskowitz in an e-mail. His nonprofit foundation provided financial support for the website development.
While the new site relies on the government database for clinical trial information, it also provides updates from the academic medical centers themselves where enrollment is taking place and a listing of trials outside the United States.
To use MyClinicalTrialLocator.com, patients enter the name of their disease or condition, their location, and the number of miles they are willing to travel. Each trial listing has recruitment information, eligibility, and contact information.
Ryan was impressed when using the new site during our phone conversation, though he said some trials were missing. He wanted to see how well it found cancer trials involving drugs that targeted mutations in certain genes. “Some trials are coming up that aren’t on clinicaltrials.gov, but I haven’t found all the trials that I know are out there,’’ he told me after putting in a search for the BRAF mutation involved in colon cancer. “It’s definitely a step in the right direction.’’
In doing my own comparison, I entered BRCA — a mutation involved in breast cancer — and searched for trials in Boston on both the government site and the new website. Similar results popped up, but the new website listed the exact location of the trials on the search results page, whereas the government one did not. The new site had simpler language that was a bit easier to understand, but the government site had more technical details that many patients are likely to care about, such as the length of the study and a list of its goals.
I learned that a planned trial at Beth Israel Deaconess Medical Center was testing a new chemotherapy drug on the myclinicaltrial website, but it wasn’t until I went on the government site that I learned the researcgers would be following patients for two to three years and looking to see whether the new drug was 20 percent more effective than the standard regimen and whether it was more toxic.
My advice? Check out both sites when looking for a clinical trial. The new site provides a link to the clinicaltrials.gov listing of the clinical trial, so it’s easy to navigate from one to the other.