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  1. Newborn Screening Translational Research Network Virtual Repository of Dried Blood Spots Investigator DemonstrationFebruary 16, 2012Call in Number: (470) 200-0303Access Code: 682-449-951

  2. Agenda • Presenter and Speaker Introductions • About the Newborn Screening Translational Research Network • Training Webinar Topics • About the Virtual Repository • Responding to Questions • Institution Administration • Request Administration • Order and Shipping Administration • Question and Answer Newborn Screening Translational Research Network

  3. Introductions Amy Hoffman, MPH Project Manager Newborn Screening Translational Research Network (NBSTRN) American College of Medical Genetics (ACMG) ahoffman@acmg.net Erica Marrari, PMP Project Manager 5AM Solutions, Inc. emarrari@5amsolutions.com Newborn Screening Translational Research Network

  4. Goals of the Hunter Kelly Newborn Screening Program Newborn Screening Translational Research Network

  5. NBSTRN Mission The mission of the Newborn Screening Translational Research Network (NBSTRN) is to improve the health outcomes of newborns with genetic or congenital disorders by means of an infrastructure that allows investigators access to robust resources for newborn screening research. Newborn Screening Translational Research Network

  6. Scope of Work • Network of State NBS Programs and Clinical Centers • National Research informatics system • Repository of dried blood spots (virtual) • IRB, consent, policy expertise and support • Facilitate research on new technologies • Facilitate research on effectiveness of treatments and long-term outcomes • Statistical leadership and clinical trial design expertise • Facilitate timely dissemination of research findings • Recruit steering committee to make recommendations Newborn Screening Translational Research Network

  7. NBSTRN Organization Network of Experts NICHD Staff: Tiina Urv, Project Officer Katharine Minker, Contract Officer Key Partners: APHL, Genetic Alliance, Regional Collaboratives, NNSGRC, Federal Agencies (Centers for Disease Control (CDC), Health Resources and Services Administration (HRSA), National Institutes of Health (NIH)) Newborn Screening Translational Research Network

  8. Project Time Framework • Years 1-2 were mainly developmental • IT and informatics • Website and content • Tools and resources • Bioethical and legal issues • Years 3-5 are implementation • Pilots to test NBSTRN infrastructure • Ongoing development and refinement • Grantee and contractor collaborations developing Newborn Screening Translational Research Network

  9. VRDBS Overview • A Centralized, web-based inventory of available DBS specimens • Allow Investigators to search and request DBS specimens • Provide Administrators with tools to review, approve/deny, and manage requests • Provide State Lab Technicians with ability to track shipments • Provide Investigator feedback • Load DBS data from participating States into the central Repository Newborn Screening Translational Research Network

  10. Value of the VRDBS • Provide simultaneous cross-state view of available DBS for participating states • Provide insight into the data elements a state collects (early stage investigators) • Provide a single-point to browse the rules and regulations of each state • Automate the workflow and provide a single point for request management • Provide a secure-web-based tool for State NBS Laboratories to share their data more easily to the research community Newborn Screening Translational Research Network

  11. VRDBS Onboarding Process Newborn Screening Translational Research Network

  12. VRDBS System Roles Newborn Screening Translational Research Network

  13. VRDBS Workflow Overview 1 2 3 Register for an Account Search for Dried Blood Spots (DBS) Make a Request for DBS NBSTRN Reviews VRDBS shows information about stored DBS input by participating states VRDBS automatically notifies state(s) that a request has been made 4 5 6 Receive Notification of State Approval or Denial of Request(s) Receive DBS and Conduct Research Return Remaining DBS to State(s) if Required State Reviews and Approves or Denies DBS State Ships Approved DBS State Determines if DBS must be Returned Newborn Screening Translational Research Network

  14. Virtual Repository Demonstration Newborn Screening Translational Research Network

  15. Question and Answer Please use the dialogue box on the webinar to submit questions. Newborn Screening Translational Research Network

  16. Monthly VRDBS Training Dates Newborn Screening Translational Research Network

  17. Thank You Thank you for attending today’s Newborn Screening Translational Research Network’s Virtual Repository of Dried Blood Spots webinar For more information, please visit nsbtrn.org oremail ahoffman@acmg.net NBSTRN is funded by contract HHSN27520080001C from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health Newborn Screening Translational Research Network