Publisher Elsevier Cuts Deal with NIH’s NCATS for Use of Rare Disease Database

Rare Daily Staff

Elsevier has reached an agreement with the National Institutes of Health’s National Center for Advancing Translational Sciences (NCATS) to allow the science and health publisher access to NCATS’ rare disease database for a new clinical decision support product to improve diagnosis of patients.

The Genetic and Rare Diseases Information Center (GARD), a program of NCATS, developed the database to provide patients, their families and friends, healthcare providers, and the public with current information on rare and genetic conditions and support sources.

“Our aim is for the GARD database to be utilized by physicians as widely as possible,” said Anne Pariser, director of the NCATS Office of Rare Diseases Research. “We are hopeful that the information contained in GARD can be used to develop diagnostic tools, and that more commercial and non-commercial entities are able to find valuable uses for it that help clinicians and patients.”

Elsevier is building an online tool to help healthcare providers broaden the scope of diagnosis based not just on patients’ symptoms, but also taking into consideration their medical history, to predict a list of diseases to which the patient may be subject.

“As we explore new ways to provide data-driven support for clinicians, we see the GARD database as a key to informing our new diagnosis product,” said John Danaher, president of Clinical Solutions, Elsevier.

The GARD database will feed the Elsevier product’s content-based algorithm to predict a list of diseases based on the symptoms provided by the patient. Created in 2002, GARD is funded by two parts of the NIH: NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable and easy to understand information about rare or genetic diseases in English or Spanish.

Financial terms of the agreement were not disclosed.

Photo: Anne Pariser, director of the NCATS Office of Rare Diseases Research