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Genetic Alliance proposes funding for health information technology, huge national "cohort study"
WASHINGTON—The US government needs to fund new health information technology and develop a long-term to translate health research into actual clinical use to treat disease, said Genetic Alliance President and CEO Sharon F. Terry at a hearing Wednesday.
Speaking before the House Subcommittee on Labor, Health & Human Services, Education, and Related Agencies, Terry proposed a huge national “cohort study,” enrolling millions of Americans in studies that would enable large numbers of clinical trials, and increased fujnding for the Rare and Neglected Disease Initiative.
She also said that appropriations must provide adequate funding for the Food and Drug Administration (FDA) and Centers for Medicare & Medicaid Services (CMS) to coordinate oversight and regulation of genetic testing.
The Genetic Alliance is a network of health-related organizations, incoluding the Alpha-1 Foundation.
