42 U.S.C. § 280g–7 — Amyotrophic lateral sclerosis registry

(a) Establishment (1) In general. Within a year after getting the report described in (b)(2)(A), the Secretary, acting through the CDC Director, may — if it makes scientific sense — (A) build a system to collect data on ALS and other motor neuron disorders that look like ALS, get misdiagnosed as ALS, or can turn into ALS, including how often these diseases occur; and (B) set up a national registry to store this data and track ALS cases across the country. (2) Purpose. The registry exists to (A) better describe how common ALS is in the U.S.; (B) study environmental and job-related factors linked to the disease; (C) outline traits like age, race, gender, and family history among people diagnosed; (D) study the link between ALS and other motor neuron disorders that resemble it; and (E) address other matters the Advisory Committee recommends. (b) Advisory Committee (1) Establishment. Within 180 days after October 8, 2008, the Secretary may create an Advisory Committee on the National ALS Registry, with up to 27 members chosen by the Secretary through CDC. (A) Two-thirds must represent government agencies — including someone from NIH (with NINDS and NIEHS representatives if the NIH Director recommends), the VA, the Agency for Toxic Substances and Disease Registry, and the CDC — and at least one member each must be a clinician who knows ALS, an epidemiologist experienced with data registries, a statistician, an ethicist, and a privacy expert versed in HIPAA. (B) One-third must be public members, including at least one representing national health associations, ALS patients or their families, clinicians, epidemiologists, geneticists who work on ALS or related diseases, and others interested in the registry. (2) Duties. The Committee may review information and recommend to the Secretary how to (A) build and maintain the registry, (B) decide what information it collects, (C) decide how that data is collected, (D) set rules for using and sharing the data, and (E) collect information on other diseases that mainly affect motor neurons and are important to ALS research. (3) Report. Within 270 days after the Committee is formed, it may send the Secretary a report with its recommendations. (c) Grants. The Secretary, through CDC, may give grants, contracts, or cooperative agreements to public or private nonprofit groups to collect, analyze, and report data on ALS and related motor neuron disorders, once the (b)(3) report comes in. (d) Coordination with State, local, and Federal registries (1) In general. The Secretary may (A) use, build on, expand, and coordinate with existing data systems — including past CDC pilot registries, the VA's ALS Registry, the NINDS DNA and Cell Line Repository, ATSDR studies (such as those in Illinois, Missouri, El Paso and San Antonio, Texas, and Massachusetts), state ALS registries, the National Vital Statistics System, and any other database the Advisory Committee recommends — and (B) let researchers access ALS data as the Advisory Committee recommends, as far as the law allows, while protecting people's privacy. (C) Coordination with NIH and the VA. Consistent with privacy law, the Secretary may share the epidemiological and other information collected under (a) with NIH and the VA. (e) Definition. A "national voluntary health association" is a national nonprofit with chapters across the states that has experience serving ALS patients and a track record in ALS research, care, and patient services.