The US National Institutes of Health and the Food and Drug
Administration have jointly set
up a database of all US clinical
trials for serious illnesses, stated to be the most comprehensive central listing available.
The action is a result of the
Food and Drug Modernization
Act of 1997, which required
the Department of Health and
Human Services to establish a
registry of the clinical trials
being conducted for both the
governmental and private sectors.
"This is the single place you
can go where the most important information, we hope, will
be available to everybody," said
Dr Donald Lindberg of the
National Library of Medicine,
the largest medical library in
the world, which is running the
registry.
The website contains information on about 4000 studies
being conducted at 47 000 sites
nationwide, most of which are
sponsored by the National Institutes of Health or universities.
More studies, particularly trials
run by drug companies, will
likely be added.
Access to the new registry is
free ( http://clinicaltrials.gov),
and the new registry will be regularly updated. … "Users are
not asked to provide personal
information, nor will they be
sent unsolicited material."
A freephone number for the
database is planned for 2001.
The website also provides
information for people considering participating in a trial. It
has a list of 20 frequently asked
questions and answers, including: what is a clinical trial; what
is a protocol; what is informed
consent; what is a control or
control group; what protections
are there for participants?
The website also contains
information on understanding clinical trials from a
patient's perspective, by Patty Delaney, a 10 year sur-
vivor of Hodgkin's disease
and member of the Food
and Drug Administration's
cancer liaison programme
in the Office of Special
Health Issues.