Head of NIH Troubled by Flagrant Violations of Law Requiring Public Disclosure of Research Results

The headline read “Failure to Report: Law Ignored, Patients at Risk.” The story this week began,

"Stanford University, Memorial Sloan Kettering Cancer Center, and other prestigious medical research institutions have flagrantly violated a federal law requiring public reporting of study results, depriving patients and doctors of complete data to gauge the safety and benefits of treatments, a STAT investigation has found.

"The violations have left gaping holes in a federal database used by millions of patients, their relatives, and medical professionals, often to compare the effectiveness and side effects of treatments for deadly diseases such as advanced breast cancer

"The worst offenders included four of the top 10 recipients of federal medical research funding from the National Institutes of Health: Stanford, the University of Pennsylvania, the University of Pittsburgh, and the University of California, San Diego. All disclosed research results late or not at all at least 95 percent of the time since reporting became mandatory in 2008."

Francis Collins, head of the NIH, said he finds the failure to report "very troubling."

The story was written by Charles Piller, West Coast editor of STAT, which is a new online news operation dealing with the life sciences. It was started by the owner of the Boston Globe. The STAT web site says it reports "from the frontiers of health and medicine."