Natural History of Disorders Screenable in the Newborn Period (R01 Clinical Trial Optional)
Study the natural history of newborn screening disorders to improve treatment, genetic understanding, and outcomes for infants.
Funder: National Institutes of Health
Due Dates: November 5, 2026 (Renewal/resubmission/revision) | February 5, 2027 (New) | March 5, 2027 (Renewal/resubmission/revision) | June 5, 2027 (New) | July 5, 2027 (Renewal/resubmission/revision) | October 5, 2027 (New) | November 5, 2027 (Renewal/resubmission/revision) | January 7, 2028 (Closing)
Funding Amounts: No budget cap (requests must reflect actual project needs), for up to 5 years; no cost sharing required
Summary: Supports natural history research on disorders currently included in, or potentially suitable for, statewide newborn screening programs.
Key Information: Studies must show how natural history data would improve clinical decisions or justify adding a condition to newborn screening.
Description
This NIH R01 program, administered by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), supports research on the natural history of disorders that currently benefit, or could benefit, from newborn screening. Part of the Hunter Kelly Newborn Screening Research Program, it seeks evidence about symptom timing, disease progression, genotype–phenotype relationships, and genetic, epigenetic, or environmental modifiers to guide age-appropriate interventions.
Projects may investigate biological mechanisms, clinical heterogeneity, diagnostic accuracy, treatment of symptoms and complications, or information needed by clinicians and families. Natural history datasets and longitudinal patient registries may also support future clinical trials. Studies may cover multiple conditions if the need for data is demonstrated for each, and multi-state screening consortia are permitted. Applications with or without clinical trials are accepted.
