We are excited to see NBSTRN take this groundbreaking step to facilitate the pace of research and provide access to quality dried blood spot specimens via a secure web-based application.
Reston, VA (PRWEB) September 27, 2012
The Newborn Screening Translational Research Network (NBSTRN) Coordinating Center recently announced the release of the Virtual Repository of Dried Blood Spots (VRDBS), an open source biospecimen management system. The VRDBS is a research tool allowing investigators more efficient access to dried blood spot (DBS) specimens. The NBSTRN Coordinating Center is funded by a contract to the American College of Medical Genetics and Genomics (ACMG) from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH). 5AM Solutions played a key role in the software development of the Virtual Repository.
Newborn screening is performed on infants in the first few days of life, to provide early identification of harmful and potentially treatable disorders that may not be apparent at birth. Through a heel prick and the collection of blood spots on filter paper, thousands of lives have been saved and early treatment has been made available to children who may have otherwise suffered severe disabilities and/or life-threatening illnesses. Following this initial screening process, residual dried blood spots (DBS) remain on the filter paper and may be made available, following state regulations, for testing, improvement, and research to improve health outcomes of newborns. The VRDBS works with states laboratories to facilitate researchers’ access to those residual dried blood spots for these purposes.
"We are excited to see NBSTRN take this groundbreaking step to facilitate the pace of research and provide access to quality dried blood spot specimens via a secure web-based application," said Erica Marrari, 5AM’s Biospecimen team leader.
The VRDBS presents information from participating states about newborn screening and provides a centralized, de-identified view of DBS, allowing researchers to locate and request specimens. For public health departments, the virtual repository provides the ability to review and manage DBS specimen requests, track shipments and obtain feedback on specimen quality. Through a direct file transfer, information is periodically uploaded into the VRDBS. Information about the specimens is structured in a standardized format allowing researchers to easily browse and query the virtual collection to determine which DBS may be suitable for their needs. This information is available on the web for researchers to search and use for their research in qualified studies. Participating states include California, Iowa, Michigan, and New York.
“The VRDBS is so important because it helps investigators overcome barriers of access to research materials while maintaining security and confidentiality, and leaving the state newborn screening programs in complete control,” said Amy Hoffman, NBSTRN Project Manager.
Visit the VRDBS at https://vrdbs.nbstrn.org/.
About the NBSTRN Coordinating Center
The Newborn Screening Translational Research Network (NBSTRN) is a resource for investigators engaged in newborn screening related research. As part of the Newborn Screening Saves Lives Act, the Hunter Kelly Newborn Screening Program was established. A key component is the NBSTRN Coordinating Center. The goal of the NBSTRN is to facilitate research to improve the health outcomes of newborns with genetic or congenital disorders through an infrastructure that provides the research community access to robust newborn screening resources.
About 5AM Solutions
5AM develops software, websites, mobile apps, and analytic/collaborative tools to meet the unique data, research, and workflow needs in the life sciences and healthcare fields. Drawing on years of experience solving problems for clients in areas such as healthcare IT, research, clinical trials, and biospecimens, the company excels at creating simple solutions for even the most complex problems — and even the most challenging budgetary and regulatory constraints. Since 2003, 5AM’s work has helped commercial, government, academic and nonprofit clients make breakthroughs in everything from standardization to visualizing, managing, and mining data. In addition to software development, scientific analytics, and consulting, 5AM offers configurable software assets such as its virtual biobanking solution, Biolocator.