text: 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.''.
target: Charles August Long Undiagnosed Diseases Research and Collaboration Network Act of 2011 or the CAL Undiagnosed Diseases Research and Collaboration Network Act of 2011 - Requires the Director of the National Institutes of Health (NIH) to establish and maintain an undiagnosed diseases patient network. Includes among the purposes of the CAL Network to: (1) provide physicians who are handling cases of undiagnosed diseases with a means to search for similar cases and to network and collaborate with physicians handling similar cases; (2) better enable and examine cross-disease research; (3) better describe the types and prevalence of cases of undiagnosed diseases in the United States; and (4) provide such data necessary to better understand the length of time for a diagnosis to be rendered and to identify barriers to diagnoses and reasons for misdiagnosis of diseases.
  
  Authorizes the Secretary of Health and Human Services (HHS) to 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.
feat_title: To amend the Public Health Service Act to provide for the establishment and maintenance of an undiagnosed diseases network, and for other purposes.