I 111th CONGRESS 1st Session H. R. 2538 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.

1.

Short title

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

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:

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.