NIH EXPANDS OPEN-ACCESS DATASET OF GENETIC AND CLINICAL DATA TO INCLUDE ASTHMA

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U.S. Department of Health and Human Services

NATIONAL INSTITUTES OF HEALTH NIH News

National Heart, Lung, and Blood Institute (NHLBI) <http://www.nhlbi.nih.gov/>

For Immediate Release: Monday, December 15, 2008

CONTACT: NHLBI Communications Office, 301-496-4236, <e-mail:

nhlbi_news@...>

NLM Communications Office, Kathy Cravedi, 301-496-6308

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

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 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 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 <http://view.ncbi.nlm.nih.gov/dbgap>, 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

<http://grants.nih.gov/grants/gwas/index.htm>. 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 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

<http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000166.v\

1.p1>

RESOURCES:

-- Framingham SNP Health Association Resource (SHARe),

<http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?id=phs000007>

-- NIH Policy on Genome-Wide Association Studies,

<http://grants.nih.gov/grants/gwas/index.htm>

-- dbGaP (database of Genotypes and Phenotypes),

<http://view.ncbi.nlm.nih.gov/dbgap>

-- Framingham Heart Study,

<http://www.nhlbi.nih.gov/about/framingham/index.html>

-- Personalized Health Care: Opportunities, Pathways, Resources:

<www.hhs.gov/myhealthcare>

Part of the National Institutes of Health, the National Heart, Lung, and Blood

Institute (NHLBI) plans, conducts, and supports research related to the causes,

prevention, diagnosis, and treatment of heart, blood vessel, lung, and blood

diseases, and sleep disorders. The Institute also administers national health

education campaigns on women and heart disease, healthy weight for children,

and other topics. NHLBI press releases and other materials are available online

at <www.nhlbi.nih.gov>.

The National Center for Biotechnology Information (NCBI) was established in

1988 as a national resource for molecular biology information. NCBI creates

public databases, conducts research in computational biology, develops software

tools for analyzing molecular and genomic data, and disseminates biomedical

information, all for the better understanding of processes affecting human

health and disease. NCBI is a division of the National Library of Medicine, the

world's largest library of the health sciences. For more information, visit

<www.nlm.nih.gov>.

The National Institutes of Health (NIH) -- The Nation's Medical Research Agency

-- includes 27 Institutes and Centers and is a component of the U.S. Department

of Health and Human Services. It is the primary federal agency for conducting

and supporting basic, clinical and translational medical research, and it

investigates the causes, treatments, and cures for both common and rare

diseases. For more information about NIH and its programs, visit <www.nih.gov>.

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This NIH News Release is available online at:

<http://www.nih.gov/news/health/dec2008/nhlbi-15.htm>.