Home > 106th Congressional Bills > H.R. 4365 (enr) To amend the Public Health Service Act with respect to children's health. [Enrolled bill] ...H.R. 4365 (enr) To amend the Public Health Service Act with respect to children's health. [Enrolled bill] ...
research into factors which may cause autism and
related developmental disorders; each program will
develop or extend an area of special research expertise
(including, but not limited to, genetics, environmental
exposure to contaminants, immunology, and other
relevant research specialty areas).
``(c) Clearinghouse.--The Secretary, acting through the Director of
the Centers for Disease Control and Prevention, shall carry out the
following:
``(1) The Centers for Disease Control and Prevention shall
serve as the coordinating agency for autism and pervasive
developmental disorders surveillance activities through the
establishment of a clearinghouse for the collection and storage
of data generated from the monitoring programs created by this
section. The functions of such a clearinghouse shall include
facilitating the coordination of research and policy
development relating to the epidemiology of autism and other
pervasive developmental disorders.
``(2) The Secretary shall coordinate the Federal response
to requests for assistance from State health department
officials regarding potential or alleged autism or
developmental disorder clusters.
``(d) Advisory Committee.--
``(1) In general.--The Secretary shall establish an
Advisory Committee for Autism and Pervasive developmental
disorders Epidemiology Research (in this section referred to as
the `Committee'). The Committee shall provide advice and
recommendations to the Director of the Centers for Disease
Control and Prevention on--
``(A) the establishment of a national autism and
pervasive developmental disorders surveillance program;
``(B) the establishment of centers of excellence in
autism and pervasive developmental disorders
epidemiology;
``(C) methods and procedures to more effectively
coordinate government and non-government programs and
research on autism and pervasive developmental
disorders epidemiology; and
``(D) the effective operation of autism and
pervasive developmental disorders epidemiology research
activities.
``(2) Composition.--
``(A) In general.--The Committee shall be composed
of ex officio members in accordance with subparagraph
(B) and 11 appointed members in accordance with
subparagraph (C).
``(B) Ex officio members.--The following officials
shall serve as ex officio members of the Committee:
``(i) The Director of the National Center
for Environmental Health.
``(ii) The Assistant Administrator of the
Agency for Toxic Substances and Disease
Registry.
``(iii) The Director of the National
Institute of Child Health and Human
Development.
``(iv) The Director of the National
Institute of Neurological Disorders and Stroke.
``(C) Appointed members.--Appointments to the
Committee shall be made in accordance with the
following:
``(i) Two members shall be research
scientists with demonstrated achievements in
research related to autism and related
developmental disorders. The scientists shall
be appointed by the Secretary in consultation
with the National Academy of Sciences.
``(ii) Five members shall be
representatives of the five national
organizations whose primary emphasis is on
research into autism and other pervasive
developmental disorders. One representative
from each of such organizations shall be
appointed by the Secretary in consultation with
the National Academy of Sciences.
``(iii) Two members shall be clinicians
whose practice is primarily devoted to the
treatment of individuals with autism and other
pervasive developmental disorders. The
clinicians shall be appointed by the Secretary
in consultation with the Institute of Medicine
and the National Academy of Sciences.
``(iv) Two members shall be individuals who
are the parents or legal guardians of a person
or persons with autism or other pervasive
developmental disorders. The individuals shall
be appointed by the Secretary in consultation
with the ex officio members under subparagraph
(B) and the five national organizations
referred to in clause (ii).
``(3) Administrative support; terms of service; other
provisions.--The following apply with respect to the Committee:
``(A) The Committee shall receive necessary and
appropriate administrative support from the Department
of Health and Human Services.
``(B) Members of the Committee shall be appointed
for a term of three years, and may serve for an
unlimited number of terms if reappointed.
``(C) The Committee shall meet no less than two
times per year.
``(D) Members of the Committee shall not receive
additional compensation for their service. Such members
may receive reimbursement for appropriate and
additional expenses that are incurred through service
on the Committee which would not have incurred had they
not been a member of the Committee.
``(e) Report to Congress.--The Secretary shall prepare and submit
to the Congress, after consultation with and comment by the advisory
committee under subsection (d), an annual report regarding the
prevalence and incidence of autism and other pervasive developmental
disorders, the results of research into the etiology of autism and
other pervasive developmental disorders, public health responses to
known or preventable causes of autism and other pervasive developmental
disorders, and the need for additional research into promising lines of
scientific inquiry.
``(f) Authorization of Appropriations.--For the purpose of carrying
out this section, there are authorized to be appropriated such sums as
may be necessary for each of the fiscal years 2001 through 2005.''.
Subtitle B--Expansion, Intensification, and Coordination of Autism
Activities of National Institutes of Health With Respect to Autism
SEC. 111. SHORT TITLE.
This subtitle may be cited as the ``Advancement in Pediatric Autism
Research Act of 2000''.
SEC. 112. EXPANSION, INTENSIFICATION, AND COORDINATION; INFORMATION AND
EDUCATION; INTERAGENCY COORDINATING COMMITTEE.
Part B of title IV of the Public Health Service Act (42 U.S.C. 284
et seq.) is amended by adding at the end the following section:
``autism
``Sec. 409C. (a) In General.--
``(1) Expansion of activities.--The Director of NIH (in
this section referred to as the `Director') shall expand,
intensify, and coordinate the activities of the National
Institutes of Health with respect to research on autism.
``(2) Administration of program; collaboration among
agencies.--The Director shall carry out this section (other
than subsection (b)) acting through the Director of the
National Institute of Mental Health and in collaboration with
any other agencies that the Director determines appropriate.
``(b) Interagency Coordinating Committee.--
``(1) In general.--The Secretary shall ensure that there is
in operation an interagency committee to be known as the
`Autism Coordinating Committee' (referred to in this subsection
as the `Committee') to coordinate all efforts within the
Department of Health and Human Services concerning autism,
including activities carried out through the National
Institutes of Health under this section and activities carried
out through the Centers for Disease Control and Prevention
under section 317H.
``(2) Membership.--The Committee shall be composed of such
directors of the national research institutes, such directors
of centers within the Centers for Disease Control and
Prevention, and such other officials within the Department of
Health and Human Services as the Secretary determines to be
appropriate. The Committee may include representatives of other
Federal agencies that serve children with autism, such as the
Department of Education.
``(3) Meetings.--The Committee shall meet not less than
twice per year.
``(c) Centers of Excellence.--
``(1) In general.--The Director shall under subsection
(a)(1) make awards of grants and contracts to public or
nonprofit private entities to pay all or part of the cost of
planning, establishing, improving, and providing basic
operating support for centers of excellence regarding research
on autism.
``(2) Research.--Each center under paragraph (1) shall
conduct basic and clinical research into autism. Such research
should include investigations into the cause, diagnosis, early
detection, prevention, control, and treatment of autism. These
centers, as a group, shall conduct research including but not
limited to the fields of developmental neurobiology, genetics,
and psychopharmacology.
``(3) Services for patients.--A center under paragraph (1)
may expend amounts provided under such paragraph to carry out a
program to make individuals aware of opportunities to
participate as subjects in research conducted by the centers.
The program may, in accordance with such criteria as the
Director may establish, provide to such subjects referrals for
health and other services, and such patient care costs as are
required for research. The extent to which the center can
demonstrate availability and access to clinical services shall
be considered by the Director in decisions about awarding the
grants to applicants which meet the scientific criteria for
funding.
``(4) Coordination of centers; reports.--The Director
shall, as appropriate, provide for the coordination of
information among centers under paragraph (1) and ensure
regular communication between such centers, and may require the
periodic preparation of reports on the activities of the
centers and the submission of the reports to the Director.
``(5) Organization of centers.--Each center under paragraph
(1) shall use the facilities of a single institution, or be
formed from a consortium of cooperating institutions, meeting
such requirements as may be prescribed by the Director.
``(6) Number of centers; duration of support.--The Director
shall provide for the establishment of not less than five
centers under paragraph (1), subject to the extent of amounts
made available in appropriations Acts. Support of such a center
may be for a period not exceeding 5 years. Such period may be
extended for one or more additional periods not exceeding 5
years if the operations of such center have been reviewed by an
appropriate technical and scientific peer review group
established by the Director and if such group has recommended
to the Director that such period should be extended.
``(d) Facilitation of Research.--The Director shall under
subsection (a)(1) provide for a program under which samples of tissues
and genetic materials that are of use in research on autism are
donated, collected, preserved, and made available for such research.
The program shall be carried out in accordance with accepted scientific
and medical standards for the donation, collection, and preservation of
such samples.
``(e) Information and Education.--
``(1) In general.--The Director shall establish and
implement a program to provide information and education on
autism to health professionals and the general public,
including information and education on advances in the
diagnosis and treatment of autism and training and continuing
education through programs for scientists, physicians, and
other health professionals who provide care for patients with
autism.
``(2) Stipends.--The Director may use amounts made
available under this section to provide stipends for health
professionals who are enrolled in training programs under this
section.
``(f) Public Input.--The Director shall under subsection (a)(1)
provide for means through which the public can obtain information on
the existing and planned programs and activities of the National
Institutes of Health with respect to autism and through which the
Director can receive comments from the public regarding such programs
and activities.
``(g) Annual Report to Congress.--The Director shall prepare and
submit to the appropriate committees of the Congress reports regarding
the activities carried out under this section. The first report shall
be submitted not later than January 10, 2002, and subsequent reports
shall be submitted annually thereafter.
``(h) Funding.--For the purpose of carrying out this section, there
are authorized to be appropriated such sums as may be necessary for
each of the fiscal years 2001 through 2005. Such authorizations of
appropriations are in addition to any other authorizations of
appropriations that are available for such purpose.''.
TITLE II--RESEARCH AND DEVELOPMENT REGARDING FRAGILE X
SEC. 201. SHORT TITLE.
This title may be cited as the ``Fragile X Research Breakthrough
Act of 2000''.
SEC. 202. NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT;
RESEARCH ON FRAGILE X.
Subpart 7 of part C of title IV of the Public Health Service Act is
amended by adding at the end the following section:
``fragile x
``Sec. 452E. (a) Expansion and Coordination of Research
Activities.--The Director of the Institute, after consultation with the
advisory council for the Institute, shall expand, intensify, and
coordinate the activities of the Institute with respect to research on
the disease known as fragile X.
``(b) Research Centers.--
``(1) In general.--The Director of the Institute, after
consultation with the advisory council for the Institute, shall
make grants to, or enter into contracts with, public or
nonprofit private entities for the development and operation of
centers to conduct research for the purposes of improving the
diagnosis and treatment of, and finding the cure for, fragile
X.
``(2) Number of centers.--In carrying out paragraph (1),
the Director of the Institute shall, to the extent that amounts
are appropriated, provide for the establishment of at least
three fragile X research centers.
``(3) Activities.--
``(A) In general.--Each center assisted under
paragraph (1) shall, with respect to fragile X--
``(i) conduct basic and clinical research,
which may include clinical trials of--
``(I) new or improved diagnostic
methods; and
``(II) drugs or other treatment
approaches; and
``(ii) conduct research to find a cure.
``(B) Fees.--A center may use funds provided under
paragraph (1) to provide fees to individuals serving as
subjects in clinical trials conducted under
subparagraph (A).
``(4) Coordination among centers.--The Director of the
Institute shall, as appropriate, provide for the coordination
of the activities of the centers assisted under this section,
including providing for the exchange of information among the
centers.
``(5) Certain administrative requirements.--Each center
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