Sec. 4. Centers for disease control and prevention
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Part B of title III of the Public Health Service Act ( 42 U.S.C. 243 et seq. ) is amended by inserting after section 317T the following: With respect to hereditary hemorrhagic telangiectasia (in this section referred to as HHT ), the Director of the Centers for Disease Control and Prevention (in this section referred to as the Director ) shall carry out the following activities: The conduct of surveillance of the prevalence and incidence of HHT as described in subsection (c).
The identification and conduct of investigations to further develop and support guidelines for diagnosis of, and intervention for, HHT, including cost-benefit studies. The development of a standardized survey and screening tool on family history. The establishment, in collaboration with a voluntary health organization representing HHT families, of an HHT resource center within the Centers for Disease Control and Prevention to provide comprehensive education on, and disseminate information about, HHT to health professionals, patients, industry, and the public.
The conduct or support of public awareness programs in collaboration with medical, genetic, and professional organizations to improve the education of health professionals about HHT. The Director shall carry out this section through collaborative approaches within the National Center on Birth Defects and Developmental Disabilities and the Division for Heart Disease and Stroke Prevention of the Centers for Disease Control and Prevention for clotting and bleeding disorders. In carrying out subsection (a), the Director shall— designate and provide funding for a sufficient number of HHT Treatment Centers of Excellence— to collect data on the prevalence of, and stroke incidence associated with, HHT; and to improve patient access to information, diagnosis, early intervention, and treatment of HHT; provide data collected under paragraph
(1)to the Paul Coverdell National Acute Stroke Registry to facilitate— analyses of the natural history of hemorrhagic and embolic stroke in HHT; and development of screening and artery-vein malformation treatment guidelines specific to prevention of complications from HHT; and develop and implement programs, targeted for physicians and health care professional groups likely to be accessed by families with HHT, to increase HHT diagnosis and treatment rates through the— establishment of a partnership with HHT Treatment Centers of Excellence designated under paragraph
(1)through the creation of a database of patients assessed at such HHT Treatment Centers of Excellence (including with respect to phenotype information, genotype information, transfusion dependence, and radiological findings); and inclusion of other medical providers who treat HHT patients. In carrying out subsection (c)(1), the Director may designate, as an HHT Treatment Center of Excellence, only academic health centers demonstrated to have each of the following: A team of medical experts capable of providing comprehensive evaluation, treatment, and education to individuals with known or suspected HHT and their health care providers. Administrative staff with sufficient knowledge to respond to patient inquiries and coordinate patient care in a timely fashion. .
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Sec. 4
Centers for disease control and prevention
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