More MS news articles for March 2001

For trials of new therapies, cast your net on the Web

http://www.usnews.com/usnews/issue/010326/nycu/trials.htm

News You Can Use 3/26/01
By Susan Brink

The first time Teri Morse found her way into a cancer clinical trial for non-Hodgkin's lymphoma, it was by serendipity. Diagnosed with the blood cancer five years ago, shortly after her third child was born, the 37-year-old Minnesotan failed to beat the disease with conventional chem-otherapy. So Morse, a freelance media buyer, talked to doctors, read everything she could, and combed the Internet to find an experimental treatment. Finally, in a cancer support group chat room, she found mention of a clinical trial in Seattle. Morse qualified and was given a cancer-seeking antibody that bought her two healthy years of remission.

After suffering a relapse last summer, Morse is back online. This time the searching is easier, even though fewer trials will be willing to take her because she has already been through one experimental treatment. But a handful of new Web sites that pull together details on thousands of clinical trials may help her find another cutting-edge therapy. "Without a computer, I'd be spending days at the library," she says, and her search would be hit or miss.

An estimated 15,000 clinical trials are typically taking place across the country at any one time. For patients with cancer and other serious diseases who haven't been helped by conventional measures, a trial offers hope, even though a participant often runs the risk of getting an inactive placebo instead of the new treatment–or a dose too low to help. In hopes of finding a suitable trial, patients and families scan ads in newspaper health sections, ask their doctors, and join support groups.

Yet "there can be a trial going on a mile from your home that you don't know about," says Courtney Hudson, CEO of a new Internet trial matching service, emergingmed.com. Patients willing to risk an unproven treatment aren't the only ones who lose when they fail to find a trial. About 80 percent of clinical trials don't meet their patient enrollment deadlines, slowing the multistep process that brings new drugs to the market.

The National Institutes of Health's Web site, clinicaltrials.gov, which went live a year ago, was the first site aimed at centralizing trial information. The site, which has had 23 million hits so far, lists some 5,200 trials covering 23 disease categories. But while the government site includes nearly all NIH-funded studies and is in the process of posting other federal studies, it has only about 800 listings of research trials sponsored by private pharmaceutical and biotech companies. One reason: These companies are reluctant to disclose the details of their trials because they have trade secrets to guard.

A handful of commercial Web sites are now posting both government- and industry-sponsored trials, for which each company pays a fee. They don't describe the trials in detail, as the NIH site does. But they have a feature missing from the government site: They prescreen patients and match them with trials. Patients specify a condition, like "relapsing-remitting multiple sclerosis." The site then requests detailed health and personal data. You don't have to answer all the questions to use the service. But "the more information you put in, the better the match," says Hudson. Users can discuss suggested trials with their own doctor before going back to the Internet company, which will put them in touch with a specific trial. Ultimately, the people running the trial decide whether or not to accept a patient.

Consulting the sites has risks. Patient advocates worry that some sites might steer patients to private studies rather than public ones because the private trials' sponsors are paying for the Internet service. So far, these fears have not been realized. Ellen Stovall of the National Coalition for Cancer Survivorship adds that patients need to guard their privacy. The sites allow users to submit information anonymously, but consumers should read the company's privacy policy. You can also call the company to ask whether the user lists will be sold if the company folds. Organizations like the American Cancer Society and the American Diabetes Association may soon link their Web pages to trial sites that have passed quality and ethical standards.

"No site has anywhere near a complete list of trials," says Fran Visco, president of the National Breast Cancer Coalition. Adds Morse, "You have to use the Internet as a whole." Patients still need to dig like crazy, find support groups, and consult with their doctor. Still, says Morse, "As a new patient, I would have been thrilled to death to find sites like these."