Notice of Information Regarding Close-Out and Transition Planning for the Newborn Screening Translational Research Network
Notice Number:
NOT-HD-23-012

Key Dates

Release Date:

June 5, 2023

Related Announcements

  • May 03, 2023 - Notice of Intent to Publish a Notice of Funding Opportunity (NOFO) for the Rare Diseases Clinical Research Consortia (RDCRC) for the Rare Diseases Clinical Research Network (RDCRN). See Notice NOT-TR-23-015.

Issued by

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Purpose

The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) plans to issue a 6-month extension to a contract that supports the Newborn Screening Translational Research Network (NBSTRN), an infrastructure resource designed to support investigators conducting research in newborn screening (NBS). The NBSTRN provides support for the collection, aggregation, use, reporting, and sharing of materials and information for NBS research. According to federal legislation in the Newborn Screening Saves Lives Act, NICHD is legislatively mandated to support NBS research under the auspices of the Hunter Kelly Newborn Screening Research Program. The NBSTRN contract has been awarded to the American College of Medical Genetics and Genomics (ACMG) since its inception in 2008.

In conducting a landscape analysis of NICHD investments in NBS research, NICHD has decided to make a major change to the NBSTRN by integrating it as one or more new disease consortia within the NCATS-led, trans-NIH Rare Diseases Clinical Research Network (RDCRN). The current cycle of the RDCRN consortium ends in 2025, so the next Notice of Funding Opportunity (NOFO) is anticipated to be published in January 2024, with an expected application due date in summer 2024 and awards made in summer 2025, as outlined in NOT-TR-23-015.

NICHD intends to extend the NBSTRN contract for 6 months as a close-out period, in order to develop transition plans for active grants that are utilizing NBSTRN resources. During this close-out period, the NICHD will also work with the NBSTRN to develop a data management and storage plan for the data currently housed in the Longitudinal Pediatric Data Resource (LPDR). NBSTRN, in conjunction with NICHD, will coordinate with NBS investigators relying on the NBSTRN's resources for the development of transition plans so that their projects do not experience significant disruptions or delays.

Inquiries

Please direct all inquiries to:

Mollie Minear, PhD
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Telephone: 301-827-9442
Email: mollie.minear@nih.gov 

Melissa Parisi, MD, PhD
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Telephone: 301-435-6880
Email: parisima@mail.nih.gov