42 U.S.C. § 247b–18 — Surveillance and research regarding muscular dystrophy

(a) In general The Secretary, through the Director of the Centers for Disease Control and Prevention, may award grants and cooperative agreements to public or nonprofit private entities — including state and local health departments, universities, and other educational institutions — to collect, analyze, and report data on Duchenne and other forms of muscular dystrophy. Instead of cash, the Secretary may give these entities direct technical assistance. (b) National muscular dystrophy epidemiology program The Secretary, through the CDC Director, may grant public or nonprofit private entities, including those listed in (a), to run epidemiological work on Duchenne and other muscular dystrophies, including collecting and analyzing data on how many cases there are, their patterns, and their symptoms. In doing this, the Secretary must set up a national surveillance program and, as much as possible, make sure the data represents all affected populations and gets shared promptly. Here too, the Secretary may give direct technical assistance instead of cash. (c) Coordination with centers of excellence The Secretary must share the epidemiological information from (a) and (b) with the centers of excellence the Director of the National Institutes of Health supports under section 283g(b) of this title. (d) Data The Secretary may make sure that patient data collected through a grant-funded Muscular Dystrophy STARnet is regularly updated to reflect how patients' conditions change over time. (e) Reports and study (1) Annual report Starting no later than 18 months after October 8, 2008, and every year after, the Director of the Centers for Disease Control and Prevention must report to the appropriate congressional committees on (A) the activities of funded MD STARnet sites that year, (B) the data and findings from MD STARnet sites funded from fiscal years 2008 through 2012, and (C) every 2 years, an outline of upcoming data collection goals and strategies. (2) Tracking health outcomes The Secretary may provide data on the health and survival outcomes of people with muscular dystrophy. (f) Authorization of appropriations Whatever money is necessary is authorized to carry out this section.