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Case Study: Newborn Screening Translational Research Network: Virtual Repository of Dried Blood Spots
Dried blood spots from infants that have confirmed, diagnosed genetic diseases are among the most difficult to acquire for investigators committed to improving the pace of progress of translational research.
The Client + The Challenge
Dried blood spots are at the core of discovery-oriented scientific research. Finding and acquiring quality dried blood spots remains one of the largest obstacles investigators face as they strive to advance the science of medical genetics and improve patient care. The American College of Medical Genetics (ACMG) engaged 5AM Solutions to work with the Newborn Screening Translational Research Network (NBSTRN) on the Virtual Repository of Dried Blood Spots (VRDBS). The VRDBS tool provides an innovative way to facilitate the identification and sharing of dried blood spot (DBS) samples for research and the advancement of science, without compromising DBS integrity or use.
Stakeholders Share a Vision
Using the Glassbox Software Development Process, 5AM coordinated with stakeholders to develop workflow, requirements, and the technical solution in an iterative manner, staying flexible and reprioritizing requirements as NSBTRN defined their processes and the VRDBS itself.
The Virtual Repository will supply investigators with centralized access to de-identified dried blood spots nationwide, thereby providing the opportunity to easily search for and request specimens, and subsequently acquire the dried blood spots (if approved by the state holding the specimen) from diagnosed positives and general population. Access to samples helps researchers investigate treatments and cures for genetic diseases.
The Result
The NBSTRN Virtual Repository of Dried Blood Spots is a web-based software product that allows disparate states’ public health repositories to be linked together to provide a single de-identified view of residual dried blood spots. The VRDBS provides the states’ public health laboratories with the tools to review and manage requests, configure approved orders, and track shipments, receipt of shipments, and disposal or return of any remaining DBS samples. All data is centrally located to ensure fast and secure search response times, while the DBS samples themselves remain at their original sources. For Investigators and the research community, the virtual repository will:
- Automate the dried blood spot request process, thereby expediting the search and request process overall
- Allow for a simultaneous cross-state view of available dried blood spots
- Provide insight into the data elements a state collects
- Aid in learning which states investigators need to approach for their research efforts
- Provide a single point to browse the critical rules and regulations of each state
The Virtual Repository will increase the visibility, quality, quantity, and population coverage of dried blood spots to investigators and the research community nationwide. The NBSTRN VRDBS represents a tremendous opportunity to change how science works (collaboratively) and where investigators work (the web), to overcome state boundaries, and to enhance awareness and access to resources that drive discovery.
Opportunity to Engage
Innovative solutions are essential to improving the pace of progress. Contact 5AM at info@5amsolutions.com or (866) 526-6042 to discuss opportunities for engagement on your most critical projects.