Clinical Trials Web
Margaret, a Maryland attorney and mother of two, was diagnosed with
thyroid cancer, she was interested in investigating the potential
of clinical trials.
doing some sleuthing, she couldn't find a central location where
information on such studies was available. She finally called a
friend who worked at NIH, who made inquiries and found a new study
evaluating thyroid cancer treatments. Margaret enrolled in the trial
and, 3 years later, remains cancer-free. But without her friend's
"inside scoop," she admits she would never have known of the trial's
can get the "inside scoop," as NIH has just launched a consumer-
friendly resource, ClinicalTrials.gov. This vast online database
contains information on more than 4,000 federal and private scientific
studies involving human subjects at more than 47,000 locations nationwide.
You can access the database at http://clinicaltrials.gov/.
new database, NIH offers up-to-date information on promising patient-oriented
research on hundreds of diseases and conditions," noted acting NIH
director Dr. Ruth Kirschstein. "Most of the trials in the database
are funded by NIH institutes and centers, and result from a long,
fruitful partnership between NIH and the American people, who support
and participate in our work."
Alexa McCray, director of NLM's Lister Hill National Center
for Biomedical Communications, also directs the ClinicalTrials.gov
provides patients, families and members of the public easy access
to information about the location of clinical trials, their design
and purpose, criteria for participation and, in many cases, further
information about the disease and treatment under study. There are
also links to individuals responsible for recruiting participants
for each study.
"If we are
to continue making the giant strides in diagnosis, treatment, and
cure of illness that marked the last century, we must have active
participation in clinical trials by well-informed volunteers," said
Dr. Donald Lindberg, director of the National Library of Medicine,
which developed and administered the new database. "ClinicalTrials.gov
will benefit trial participants, researchers, health care professionals
and, over time, the general public."
Skarulis, senior clinical investigator at NIDDK, is the principal
investigator for the thyroid cancer trial Margaret took part in.
She, too, recognizes the potential of ClinicalTrials.gov.
"After 3 years,
only two participants enrolled in our trial, despite recruitment
efforts to find more patients aimed primarily at referring physicians,"
she explained. "The new publicity given to our study and others
by ClinicalTrials.gov will help investigators recruit greater numbers
of qualified patients."
grew out of 1997 legislation requiring the Department of Health
and Human Services, through NIH, to establish a registry for both
federally and privately funded trials "of experimental treatments
for serious or life-threatening diseases and conditions," thereby
broadening the public's access to information about clinical trials
to a wide range of diseases.
McCray, who directs the ClinicalTrials.gov project at NLM, commented,
"The project is proceeding in several major phases. In the first
phase, we were interested in collecting information primarily about
the studies that are being funded by NIH, or that are being conducted
right here on the NIH campus. With the release of ClinicalTrials.gov,
the first phase of the project is well under way. In the next phase
we will include non-NIH sponsored trials from other federal agencies
and private industry."
is a completely confidential Web site. No registration or personal
identification of any kind is required. People who search the site
will not be contacted by the sponsors of clinical trials or by anyone
about ClinicalTrials.gov, in the form of a "Q&A" document, is available
or by calling 496-6308. It is also linked to a press release about
the new database, available on the Web at http://www.nlm.nih.gov/news/press_releases/clintrlpr00.html.