I 
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 Representa-
tives 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 Net-
work Act of 2011’’ or the ‘‘CAL Undiagnosed Diseases 
Research and Collaboration Network Act of 2011’’. 
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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 pri-
vacy and security law (as defined in section 
3009(a)(2)), to search for similar cases and to net-
work 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 re-
search whereby cases of undiagnosed diseases can be 
cross-referenced against attributes of common dis-
eases and rare diseases to assist in the rendering of 
a diagnosis; elucidate commonalities; identify atypi-
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cal 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 dis-
eases reported by individuals specified by the Direc-
tor of NIH; 
‘‘(5) better outline key demographic factors 
(such as age, race or ethnicity, gender, sex, geo-
graphic location, and family medical history) of indi-
viduals who are undiagnosed; 
‘‘(6) provide such data necessary to better un-
derstand the length of time for a diagnoses to be 
rendered in cases of undiagnosed diseases and to 
identify barriers to diagnoses and reasons for mis-
diagnosis of diseases; and 
‘‘(7) provide such information necessary to de-
termine, 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 Na-
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tional 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 dis-
eases 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 sepa-
rate undiagnosed disease programs of like scope 
and nature to the Undiagnosed Disease Pro-
gram at locations throughout the United States 
under the guidance of and through grants pro-
vided by and through such Undiagnosed Dis-
eases Program. 
‘‘(c) CONTENT OF THE CAL NETWORK.—The Sec-
retary 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.— 
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‘‘(1) 
DESIGN
REQUIREMENTS.—Subject 
to 
paragraph (2), for the purposes described in sub-
section (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 indi-
viduals 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 Net-
work 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. 
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‘‘(2) INFORMATION WHICH MAY NOT BE PUB-
LICALLY 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 finan-
cial 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 con-
tracts 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 dis-
orders 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, re-
search, and development necessary to implement the 
CAL Network; and 
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‘‘(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 pur-
poses of this section, the term ‘undiagnosed disease’ 
means a medically unexplained chronic multi-symptom 
disease that— 
‘‘(1) causes the decline of, limitations in, or ces-
sation of a person’s developmental status, functional 
status, quality of life, or any combination thereof; 
‘‘(2) has not been diagnosed by a medical spe-
cialist in a tertiary medical center; 
‘‘(3) is defined by a cluster of signs or symp-
toms; 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.— 
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‘‘(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.’’. 
Æ 
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