[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2538 Introduced in House (IH)]

111th CONGRESS
  1st Session
                                H. R. 2538

To amend the Public Health Service Act to provide for the establishment 
          and maintenance of an undiagnosed diseases registry.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                              May 21, 2009

Mr. Carter (for himself and Mr. Burgess) introduced the following bill; 
       which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
To amend the Public Health Service Act to provide for the establishment 
          and maintenance of an undiagnosed diseases registry.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Charles August `CAL' Long 
Undiagnosed Diseases Registry Act of 2009''.

SEC. 2. REGISTRY OF UNDIAGNOSED DISEASES.

    (a) In General.--Title III of the Public Health Service Act (42 
U.S.C. 241 et seq.) is amended by inserting after section 317T the 
following:

``SEC. 317U. UNDIAGNOSED DISEASES REGISTRY.

    ``(a) Establishment.--The Secretary, acting through the Director of 
the Centers for Disease Control and Prevention, shall establish and 
maintain an undiagnosed diseases registry (in this section referred to 
as the `registry').
    ``(b) Content of Registry.--The Secretary shall include in the 
registry such information respecting undiagnosed diseases as the 
Secretary deems appropriate for the purpose of facilitating the early 
recognition, prevention, treatment, cure, and control of such diseases.
    ``(c) Availability.--For the purpose described in subsection (b), 
the Secretary may make the information in the registry publicly 
available, except the Secretary shall not publicly disclose--
            ``(1) individually identifiable information; or
            ``(2) trade secrets or commercial or financial information 
        obtained from a person and privileged or confidential, as 
        provided in section 552(b)(4) of title 5, United States Code.
    ``(d) Authorization of Appropriations.--To carry out this section, 
there are authorized to be appropriated $5,000,000 for fiscal year 2010 
and such sums as may be necessary for each of fiscal years 2011 through 
2015.''.
    (b) First Operation of Registry.--The Secretary of Health and Human 
Services, acting through the Director of the Centers for Disease 
Control and Prevention, shall ensure that the undiagnosed diseases 
registry established pursuant to section 317U of the Public Health 
Service Act, as added by subsection (a), becomes operational not later 
than one year after the date of the enactment of this Act.
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