Learning About Medical Studies Just Got Easier
At points along the searches, links are offered to the National Library of Medicine's consumer health information service, MEDLINE Plus, which has extensive disease-specific information -- diagnosis, therapies, support groups -- much of it provided by the NIH institutes and centers. Phone numbers and email addresses of principal investigators for each clinical trial are also included.
"What makes the most sense -- or what we hope will happen -- is that people will take this information to their doctors. Eligibility criteria are quite specific, so their doctors probably will be the ones to make the call to see if patients are eligible," McRay says.
The web site has been in development for 18 months. A two-week testing period in November involved 60 volunteers from patient support groups who "pounded on the system for two weeks," says McRay. "They worked hard, they did a lot of searches, and we got very good comments which led to modifications and improvements in the system. Plus we've done other testing."
The system will be updated nightly, and study sites across the country will continually feed data into the site. Confidentiality is guaranteed, says McRay. "People don't have to register, which is very important. We will not track anything about them or give out names."
Calling the project very important, Adrian Dobs, MD, director of the Johns Hopkins Clinical Trials Unit, tells WebMD, "Patients are extremely interested in learning more about clinical trials and they have nowhere to go. There's very little centralization of information about these trials."
Only an estimated 5% of clinical trials have all the participants they need, says Dobs. "Yet there are patients who want to participate. This is a real opportunity for patients to find out what studies can help them. I'm hoping the NIH will be successful. It's a very ambitious job."
Theresa Gillespie, PhD, director of clinical research at Winship Cancer Institute at Emory University in Atlanta, tried the browsing mode first when she investigated the new web site -- and found it full of technical terms unfamiliar to most of her patients. "I looked up 'C' for cancer, which patients would do, and there are no listings for cancer. They've done it by the pathology; there are terms like carcinoma and neoplasms. For a patient, having your pathology report in front of you would really help."