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Office of Genomics and Disease Prevention  
Office of Genomics and Disease Prevention


Model System for Collecting, Analyzing and Disseminating Information on Genetic Tests

Office of Genomics and Disease Prevention,CDC Logo for Foundation for Blood Research

In September 2000, the Office of Genomics and Disease Prevention, CDC, funded a new cooperative agreement with the Foundation for Blood Research (FBR).  FBR is a nonprofit research organization with expertise in clinical and laboratory investigation.  They have carried out a wide array of studies evaluating test performance, quality control, and effectiveness. The current project is to develop a model system for assembling, analyzing, disseminating and updating existing data on the safety and effectiveness of DNA-based genetic tests and testing algorithms. (More detail about the process and definitions of terms can be found at ACCE Project).

Over a 3-year period, five tests for different disorders will be evaluated from the standpoint of analytical validity, clinical validity, clinical utility, and related ethical/legal/social issues. The goal of this effort is to facilitate the appropriate transition of genetic tests from investigational settings to use in clinical and public health practice. This goal is consistent with preliminary recommendations of the Department of Health and Human Services Secretary's Advisory Committee on Genetic Testing.

View Draft Genetic Test Reviews
Draft Genetic Test Reviews or sections of reviews have been posted online for viewing.  The matrix below indicates which review, by disorder, is currently available in Acrobat PDF and/or HTML formats.  Click on the corresponding check mark icon to view.  Additional HTML sections will be added as they become available.  For those sections available in PDF format, you will need free Adobe Acrobat software.

Readers are welcome to e-mail comments to FBR at fbrinfo@fbr.org.  Please indicate the title of the Genetic Test Review in the subject heading of your e-mail.

 
Cystic Fibrosis
Hemochromatosis
Venous Thromboembolism
Breast & Ovarian Cancer
Colorectal Cancer
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check - link to Cystic Fibrosis Disorder & Setting report

not yet available
check - link to Cystic Fibrosis Analytic validity report 
not yet available
check - link to Venous Thromboembolism Analytic Validity reportacrobat logo - this report is available in pdf format
not yet available
not yet available
check - link to Venous Thromboembolism Analytic Utility reportacrobat logo - this report is available in pdf format
not yet available

Ethical, Legal & Social Issues

not yet available
not yet available not yet available not yet available not yet available

Master Reference List and Glossary

not yet available not yet available not yet available not yet available

Use the Genomics and Disease Prevention Information System (GDPInfo)to find relevant documents on genetic testing or the above disorders. Create a search in GDPInfo by topic (use check boxes), by disease (use disease menu) or a combination of both criteria.   Search now.

Last Updated October 25, 2004