Open Access News

News from the open access movement


Tuesday, December 16, 2008

NIH adds asthma data to dbGaP

NIH Expands Open-Access Dataset of Genetic and Clinical Data to Include Asthma, press release, December 15, 2008.

The National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health has expanded its collection of genetic and clinical data first made freely available to researchers worldwide last year, to include clinical and genetic information collected from three asthma research networks. ...

SHARP [SHARe-Asthma Resource Project] includes data on 2,332 people with asthma and 805 families whose DNA was tested for 1 million genetic variations. In addition, clinical data gathered during asthma clinical trials, such as lung function, allergy status, and respiratory symptoms are included in the database. In this way, SHARP will permit researchers to relate study participants' genetic variations to their clinical and laboratory test results, thereby enabling future discoveries of links between genes and health for asthma and other airway diseases. To protect the confidentiality of study participants who agreed to share their medical data, the database does not include any personal information. ...

The three asthma clinical research networks providing data are the Childhood Asthma Management Program (CAMP), the Childhood Asthma Research and Education Network (CARE), and the Asthma Clinical Research Network (ACRN) all funded by NHLBI. For more than 10 years, these networks have been major sources of information about the best practices in asthma care, translating and developing new knowledge for patients and physicians. ...

SHARP data is accessed through dbGaP, or the database of Genotypes and Phenotypes, a Web-based resource for archiving and distributing data from genome-wide association studies (GWAS). ...

Individual-level data can be used only by authorized investigators who meet requirements for access outlined in the NIH GWAS policy. Researchers are prohibited from redistributing data or trying to determine the identity of participants. ...

See also our past posts on dbGaP.