U.S. Department of Health and Human ServicesHHS National Institutes of HealthNIH National Center for Advancing Translational SciencesNCATS
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Develop Programs To Speed Diagnosis

Overview

Getting the right diagnosis can take many years, especially for rare diseases. Your patient group can develop programs that speed diagnosis, including outreach programs to healthcare professionals or public awareness campaigns. Diagnostic and screening programs can be developed to diagnose all those who may benefit from a newly approved therapy (including drugs, biologics, and medical devices). Depending on the optimal age for treatment, you may work to have your disease added to newborn screening programs. Because the steps to diagnosing a disease can vary greatly, the strategies you use to make certain all who will benefit from a newly approved therapy will vary as well.

Resources

Newborn Screening
Advisory Committee on Heritable Disorders in Newborn and Children U.S. Health Resources & Services Administration (HRSA) (link)
Recommended Uniform Screening Panel (RUSP) U.S. Health Resources & Services Administration (HRSA) (link)
Parental Permission for Pilot Newborn Screening Research: Guidelines From the NBSTRN Newborn Screening Translational Research Network (NBSTRN) (link)
CDC Newborn Screening Portal Centers for Disease Control and Prevention (CDC) (link)
Baby's First Test Public Square Baby's First Test (link)
Tips for Success
National Coordinating Center for the Regional Genetics Networks About Us National Coordinating Center for the Regional Genetics Networks (link)
Genomics Revolution: Reliability and Access Global Genes (link)
PCORI Funding Informational Presentation Global Genes (link)
Patient-Centered Outcomes Research Institute (PCORI) About Us Patient-Centered Outcomes Research Institute (PCORI) (link)