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42 U.S. Code § 280g-7. Amyotrophic lateral sclerosis registry
(a) Establishment
(1) In generalNot later than 1 year after the receipt of the report described in subsection (b)(2)(A), the Secretary, acting through the Director of the Centers for Disease Control and Prevention, may, if scientifically advisable—
(A)
develop a system to collect data on amyotrophic lateral sclerosis (referred to in this section as “ALS”) and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS, including information with respect to the incidence and prevalence of the disease in the United States; and
(B)
establish a national registry for the collection and storage of such data to develop a population-based registry of cases in the United States of ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS.
(2) PurposeIt is the purpose of the registry established under paragraph (1)(B) to—
(A)
better describe the incidence and prevalence of ALS in the United States;
(B)
examine appropriate factors, such as environmental and occupational, that may be associated with the disease;
(C)
better outline key demographic factors (such as age, race or ethnicity, gender, and family history of individuals who are diagnosed with the disease) associated with the disease;
(D)
better examine the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS; and
(E)
other matters as recommended by the Advisory Committee established under subsection (b).