That it is not possible to find information about all initiated clinical
trials is of international concern. This is a particular worry because scientists
tend to publish their positive findings more often than their negative findings
(publication bias). A comprehensive register of initiated clinical trials,
with each trial assigned a unique identifier, would inform reviewers, physicians,
and others (eg, consumers) about which trials had been started and directly
address the problem of publication bias. Patients and their clinicians could
also know which trials are open for enrollment, thus speeding medical advances.
Individuals who participate in clinical trials typically provide consent in
the belief that they are contributing to medical knowledge. But if the knowledge
gained is never reported, the trust between patients and investigators and
that between patients and research ethics review boards are both damaged.
Ethical issues are of particular concern if industry is gaining financially
from public involvement in trials, but refusing to reciprocate by making information
from industry-sponsored trials generally available. All stakeholders—investigators,
research organizations and institutions, journal editors, lawmakers, consumers,
and others—must act now, together and in their own domains, to ensure
comprehensive registration of clinical trials.
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