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NIH Expands Open-Access Dataset of Genetic and Clinical Data to Include Asthma

Action Creates Largest Public Access Collection of Asthma Clinical and Genetic Data

For Immediate Release:
December 15, 2008, 9:00 AM EST

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. In 2007, the NHLBI initiated SHARe, (SNP Health Association Resource), a Web-based dataset which provides qualified researchers with free access to a wealth of data from multiple large population-based studies, starting with the Framingham Heart Study. This new expansion of the project, called SHARe-Asthma Resource Project (SHARP) is also funded by the NHLBI.

SHARP 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 NIH is committed to both broadly sharing research information while also providing maximum safeguards to the privacy and confidentiality of our valued study volunteers," said NHLBI Director Elizabeth G. Nabel, M.D. "Expanding the SHARe program to include asthma through the SHARP initiative will greatly expand our understanding of lung disease biology using genetic and genomic technologies."

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.

“The clinical asthma networks have been the backbone of our translational research program at NHLBI for many years,” said NHLBI Division of Lung Diseases Director James P. Kiley, Ph.D. “Creating this new resource not only provides a new opportunity for our own network investigators to use this unique data, but opens it up to the broader scientific community as well.”

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). GWAS explore the associations between genes (genotype information) and observable traits (phenotypes), such as weight, cholesterol levels, or the presence or absence of a disease. Launched in December 2006, dbGaP was developed and is operated by the National Center for Biotechnology Information (NCBI), a division of NIH's National Library of Medicine (NLM).

Genotyping information, including data from a 1 million SNP mapping array, was generated for SHARP by Affymetrix Inc., through a contract with NHLBI. Summary data and analyses are available to researchers with appropriate approvals. 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.

“The SHARP investigators are excited about this collaboration and its potential for advancing the genetics and genomics of asthma. We are committing ourselves to work closely together to make this a success, not just for the network investigators, but for others as well,” said Scott T. Weiss M.D., M.S., professor of medicine, Harvard Medical School, and co-chair of the SHARP Executive Committee.

Researchers interested in applying for access to individual-level SHARP (Asthma SHARe) data should follow the directions at

Supplemental Information

Framingham SNP Health Association Resource (SHARe),

NIH Policy on Genome-Wide Association Studies,

dbGaP (database of Genotypes and Phenotypes),

Framingham Heart Study,

Personalized Health Care: Opportunities, Pathways, Resources: [link no longer available]