Pub. L. 78-373, tit. III, pt. M, sec. 399E–1 (as amended)
NATIONAL CHILDHOOD CANCER REGISTRY.
SEC. 399E–1. [280e–3a] NATIONAL CHILDHOOD CANCER REGISTRY.
(a) In General.—The Secretary, acting through the Director of the Centers for Disease Control and Prevention, may make awards to State cancer registries to enhance and expand infrastructure to collect information to better understand the epidemiology of cancer in children, adolescents, and young adults. Such registries may be updated to include each occurrence of such cancers within a period of time designated by the Secretary.
(b) Activities.—The grants described in subsection (a) may be used for—
(1) identifying, recruiting, and training potential sources for reporting childhood, adolescent,
and young adult cancer cases;
(2) developing practices to ensure early inclusion of childhood, adolescent, and young adult cancer
cases in State cancer registries through the use of electronic reporting;
(3) collecting and submitting deidentified data to the Centers for Disease Control and Prevention for
inclusion in a
national database that includes information on childhood, adolescent, and
young adult cancers; and
(4) improving State cancer registries and the database described in paragraph (3), as appropriate,
including to support the early inclusion of childhood, adolescent, and
young adult cancer cases.
(c) Coordination.—To encourage the greatest possible efficiency and effectiveness of federally supported efforts with
respect to the activities described in this section, the Secretary shall
ensure the appropriate coordination of programs supported under this
section
with other federally supported cancer registry programs and the activities
under section 417E(a), as appropriate.
(d) Informed Consent and Privacy Requirements and Coordination With Existing Programs.—The activities described in this section shall be subject to section 552a of title 5, United States Code, the regulations promulgated under section 264(c) of the Health Insurance Portability and Accountability Act of 1996, applicable Federal and State informed consent regulations, any other applicable Federal and State laws relating to the privacy of patient information, and section 399B(d)(4) of this Act.