[Congressional Bills 112th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2671 Introduced in House (IH)]
112th CONGRESS
1st Session
H. R. 2671
To amend the Public Health Service Act to provide for the establishment
and maintenance of an undiagnosed diseases network, and for other
purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
July 27, 2011
Mr. Carter 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 network, and for other
purposes.
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 Long Undiagnosed
Diseases Research and Collaboration Network Act of 2011'' or the ``CAL
Undiagnosed Diseases Research and Collaboration Network Act of 2011''.
SEC. 2. CAL NETWORK OF UNDIAGNOSED DISEASES.
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. THE NATIONAL CAL NETWORK OF UNDIAGNOSED DISEASES.
``(a) Establishment.--The Secretary, acting through the Director of
NIH, shall establish and maintain an undiagnosed diseases patient
network (in this section referred to as the `CAL Network').
``(b) Purposes.--The purposes of the CAL Network shall be to--
``(1) provide physicians who are handling cases of
undiagnosed diseases with a means, consistent with applicable
privacy laws, including HIPAA privacy and security law (as
defined in section 3009(a)(2)), to search for similar cases and
to network and collaborate with the physicians handling such
similar cases in order to find a diagnosis and to improve
patient care and outcomes;
``(2) better enable and examine cross-disease research
whereby cases of undiagnosed diseases can be cross-referenced
against attributes of common diseases and rare diseases to
assist in the rendering of a diagnosis; elucidate
commonalities; identify atypical presentations, rare subgroups,
similar findings; and identify potential treatments;
``(3) better describe the types and prevalence of cases of
undiagnosed diseases in the United States;
``(4) make necessary data available to elucidate
appropriate factors (such as genetic, environmental, and
occupational factors) that may be associated with the various
types of cases of undiagnosed diseases reported by individuals
specified by the Director of NIH;
``(5) better outline key demographic factors (such as age,
race or ethnicity, gender, sex, geographic location, and family
medical history) of individuals who are undiagnosed;
``(6) provide such data necessary to better understand the
length of time for a diagnoses to be rendered in cases of
undiagnosed diseases and to identify barriers to diagnoses and
reasons for misdiagnosis of diseases; and
``(7) provide such information necessary to determine, in
order to improve access of individuals with undiagnosed
diseases throughout the United States (including those with
severe illnesses which limit or restrict travel) to programs
similar to the Undiagnosed Disease Program conducted at the
National Institutes of Health, if the needs and number of such
individuals support--
``(A) the expansion of such Undiagnosed Disease
Program, as in existence as of the date of the
enactment of this section, to include the establishment
of additional undiagnosed diseases programs of like
scope and nature at other locations throughout the
United States; and
``(B) the establishment by entities other than the
National Institutes of Health of separate undiagnosed
disease programs of like scope and nature to the
Undiagnosed Disease Program at locations throughout the
United States under the guidance of and through grants
provided by and through such Undiagnosed Diseases
Program.
``(c) Content of the CAL Network.--The Secretary shall include in
the CAL Network such information respecting undiagnosed diseases as the
Secretary deems appropriate for the purposes described in subsection
(b) and other purposes to facilitate the early recognition, treatment,
cure, and control of such diseases.
``(d) Availability.--
``(1) Design requirements.--Subject to paragraph (2), for
the purposes described in subsection (c) and consistent with
applicable privacy laws, including HIPAA privacy and security
law (as defined in section 3009(a)(2)), the Secretary shall
ensure that the CAL Network is designed in such a manner as
to--
``(A) make the information in the CAL Network
available to appropriate health care professionals,
patients, and other qualified individuals and
organizations, as determined by the Secretary, who are
registered to access such network in accordance with
such process and requirements as specified by the
Secretary;
``(B) make epidemiological and other types of
information obtained through the CAL Network available
to Federal agencies and health-related agencies;
``(C) provide for different levels and types of
access to such network to be granted based on the
circumstances and individuals involved; and
``(D) allow for an individual to have only the
level and type of access to the network so granted.
``(2) Information which may not be publically disclosed.--
The design under paragraph (1) shall ensure that the following
information is not publicly disclosed:
``(A) Individually identifiable information.
``(B) 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.
``(e) Grants.--The Secretary, acting through the Director of NIH,
may award grants to, and enter into contracts and cooperative
agreements with, public or private nonprofit entities for--
``(1) the collection, analysis, and reporting of data on
cases of undiagnosed diseases and other disorders that can
often go undiagnosed or be misdiagnosed as other diseases or
disorders; and
``(2) the establishment of separate undiagnosed disease
programs described in subsection (b)(7)(B).
``(f) Implementation Schedule.--In carrying out this section, the
Secretary shall--
``(1) not later than 1 year after the date of the enactment
of this section, complete any study, research, and development
necessary to implement the CAL Network; and
``(2) complete the implementation of the CAL Network such
that it is fully operational by not later than September 30,
2013.
``(g) Undiagnosed Diseases Defined.--For purposes of this section,
the term `undiagnosed disease' means a medically unexplained chronic
multi-symptom disease that--
``(1) causes the decline of, limitations in, or cessation
of a person's developmental status, functional status, quality
of life, or any combination thereof;
``(2) has not been diagnosed by a medical specialist in a
tertiary medical center;
``(3) is defined by a cluster of signs or symptoms; which
by history, physical examination, and laboratory tests cannot
be attributed to any known clinical diagnosis;
``(4) is without conclusive pathophysiology or etiology;
``(5) is characterized by overlapping symptoms and signs;
or
``(6) exhibits an inconsistent demonstration of laboratory
abnormalities.
``(h) Authorization of Appropriations.--
``(1) In general.--To carry out this section, there are
authorized to be appropriated $5,000,000 for the period of
fiscal years 2012 through 2017.
``(2) Offset.--To offset amounts appropriated pursuant to
the authorization of appropriations in paragraph (1), the
Secretary shall reduce funds that would otherwise be obligated
and expended under the account heading `National Institutes of
Health--Office of the Director' by $5,000,000 for the period of
fiscal years 2012 through 2017.''.
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