Project Grant R01HD114807

Award Date 9/1/24
Completion Date 5/31/29
Dollars Obligated $864K
Federal Grant Program
93.172
Assistance Type
Project Grant
Place of Performance
Boston, MA 02215, USA
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This $864,308 Project Grant award from the National Human Genome Research Institute (NHGRI), under the Human Genome Research program (CFDA 93.172), supports research to understand the long-term impact and value of using genomic sequencing at birth to inform ongoing pediatric care. The key objectives are to:

  1. Conduct stakeholder interviews to understand how to best implement newborn genomic sequencing and design supporting systems to maximize its lifelong utility for children and families.

  2. Perform follow-up studies on prior newborn genomic sequencing trial participants to document how providers and families utilized the genomic information as the children aged, identifying potential benefits and harms.

  3. Develop a mathematical model to project the lifetime benefits, risks, and cost-effectiveness of different strategies for reanalyzing existing newborn genomic data over time.

The goal is to provide critical evidence on implementing newborn genomic sequencing, managing findings, and reanalyzing data to ensure this technology fulfills its promise of providing lifelong benefits to individuals and advancing public health. This award is held by Harvard Pilgrim Health Care Inc., a non-profit healthcare research organization, and runs from September 2024 through May 2029.

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