It can take many months for researchers to locate a sufficient number of eligible study participants for a clinical trial on a rare disease. Although databases listing volunteers from past studies and patients who have never been study subjects exist at universities and hospitals, investigators seeking to access such databases at institutions beyond where they work face bureaucratic obstacles—making it difficult to quickly identify volunteers with rare conditions.

With support from the US National Institutes of Health (NIH), a team led by Nicholas Anderson at the University of Washington aims to address this problem by extending a Harvard-based network of 'anonymized' patient information from hospitals to include additional medical centers beyond the Harvard University system, creating a one-stop shop for investigators seeking suitable study volunteers.

This project is one of three $1.3-million contracts awarded by the NIH in January to build or expand databases of patient information for small-to medium-size clinical trials.

“Each of the informatics pilot projects seeks to reduce the burden on these researchers as they generate hypotheses, initiate studies and collect and analyze their data,” says Elaine Collier of the NIH's National Center for Research Resources.

Isaac Kohane, co-director of Informatics for Integrating Biology and the Bedside (i2b2), a center for biomedical computing supported by the NIH, explains that i2b2 created software to facilitate researchers' access to patient data. “We asked the question, 'Can we use information that is a byproduct of routine healthcare for our studies without having to create a parallel clinical research [database]?'” he says.

Harvard researchers can currently access certain anonymized patient data from several hospitals affiliated with the university using the i2b2 system. Anderson plans to work closely with doctors beyond the Harvard hospitals to build a wider system that integrates anonymized demographic and diagnostic data from patients for researchers to search.

Anderson hopes the current project will shed light on how to design future interinstitution data-sharing systems. “If this [database] model doesn't work out, I think we'll know what it takes [to make such a system work],” he says.

The other two projects supported by the NIH awards will build or extend networks to share certain information about people who have volunteered for biomedical studies. One of these, based out of Vanderbilt University, called the Research Electronic Data Capture (REDCap) system, aims to enhance a data-sharing tool currently used by more than 30 institutions. The other will develop a program named Physio-MIMI to enable sharing of details pertaining to heart and genetic data.