Advocate for Access to Medical Data

The Washington Post ^ | July 28, 2004 | Mary Fitzgerald

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Linguist Wants Patients to Understand

Ellen Berty first stumbled across the ClinicalTrials.gov Web site while researching treatments for the Type 1 diabetes that has dogged her since the age of 13. Months later, after receiving an islet cell transplant in a clinical trial at the National Institutes of Health, she couldn't wait to tell her neighbors about the Web site that had pointed her in the right direction.

"All the information I needed was there on the site; I didn't have to go anywhere else," she said. "One day, I was telling my neighbor Alexa how I found out about the trial, and she just looked at me and said, 'Ellen, that's my project.' "

ClinicalTrials.gov was the brainchild of Alexa McCray, director of the Lister Hill National Center for Biomedical Communications, an intramural research division of the National Library of Medicine at the National Institutes of Health. Taking the lead from the Food and Drug Administration Modernization Act 1997, which called for the establishment of a clinical trials registry that would be available to the public, McCray turned to the Internet to ensure an accessible and user-friendly resource for everyone from patients to health care professionals.

Since its inception in February 2000, the federally funded database has been embraced by millions of people trying to pick their way through the often byzantine world of clinical trials.

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