I 113th CONGRESS 2d Session H. R. 4251 IN THE HOUSE OF REPRESENTATIVES March 14, 2014 Mr. Pascrell (for himself and Mr. Rooney ) introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To direct the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention, to establish a surveillance system regarding traumatic brain injury, and for other purposes.

1. Short title This Act may be cited as the National Traumatic Brain Injury Research and Treatment Improvement Act of 2014 . 2. Findings (a) Findings The Congress finds as follows: (1) State data and monitoring systems provide reliable data on injury causes and risk factors, identify trends in the incidence of traumatic brain injury, enable the development of cause-specific prevention strategies focused on populations at greatest risk, and monitor the effectiveness of such strategies. (2) Since 1995, when the Centers for Disease Control and Prevention published Guidelines for Surveillance of Central Nervous System Injury, additional causes of traumatic brain injury have emerged: military-related traumatic brain injuries; sports-related concussions; traffic injuries resulting from texting while driving; and increasing numbers of falls-related traumatic brain injuries among older adults. (3) In their 2013 report, Sports-Related Concussions in Youth: Improving the Science, Changing the Culture, the Institute on Medicine and the National Research Council noted that there is currently a lack of data to accurately estimate the incidence of sports-related concussions across a variety of sports and for youth across the pediatric age spectrum. The report recommended that the Centers for Disease Control and Prevention establish and oversee a national surveillance system to accurately determine the incidence of sports-related concussions, including those in youth ages 5 to 21, taking into account Federal efforts to collect information on traumatic brain injury. (4) Traumatic brain injury is a substantial public health problem among older persons. As the population of older persons continues to grow in the United States, the need to design and implement proven and cost-effective prevention measures that focus on the leading causes of traumatic brain injury becomes more urgent. (5) In order to implement this Act, the Centers for Disease Control and Prevention needs to collaborate with Federal agencies reporting military-related traumatic brain injuries, school systems reporting traumatic brain injuries, Medicaid and other Federal programs, and State agencies. 3. Establishing requirements to improve the research and treatment of traumatic brain injury (a) In general The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall— (1) evaluate existing surveillance and data collections systems that track the incidence and circumstances of traumatic brain injury, including concussion; (2) not later than 9 months after the date of enactment of this Act, submit a report to the Congress outlining the findings of the evaluation under paragraph (1); and (3) establish a statistically sound, scientifically credible, integrated surveillance system regarding traumatic brain injury, to be known as the National Traumatic Brain Injury Surveillance System . (b) Research The Secretary shall ensure that the National Traumatic Brain Injury Surveillance System is designed in a manner that facilitates further research on brain injury. (c) Content In carrying out subsection (a), the Secretary— (1) shall provide for the collection and storage of information (excluding personally identifiable information) on the incidence and prevalence of traumatic brain injury, including concussion, in the United States across the lifespan; (2) to the extent practicable, shall provide for the collection and storage of other available information (excluding personally identifiable information) on traumatic brain injury, such as information concerning demographics and other information associated with the incidence of a traumatic brain injury, such as— (A) age; (B) race and ethnicity; (C) sex; (D) geographic location; (E) history of head injury (including injury type and the approximate date of injury); (F) pre-existing conditions, such as learning disabilities and attention deficit hyperactivity disorder; and (G) co-occurring issues, such as substance abuse or post-traumatic stress disorder; (3) to the extent practicable, shall provide for the collection and storage of information relevant to analysis on traumatic brain injury, such as information concerning— (A) impact location on the body and nature of the impact; (B) qualifications of personnel making the traumatic brain injury diagnosis; (C) assessment tool used to make the diagnosis; (D) signs and symptoms consistent with a head injury; (E) sport or activity and the level of competition (if a sports-related activity); (F) use of protective equipment and impact monitoring devices; and (G) severity of the traumatic brain injury; and (4) may address issues identified during the consultation process under subsection (d). (d) Consultation In carrying out this section, the Secretary shall consult with individuals with appropriate expertise, including— (1) epidemiologists with experience in disease surveillance or registries; (2) representatives of national health associations that— (A) focus on brain injury; and (B) have demonstrated experience in research, care, or patient services; (3) State public health agencies; (4) health information technology experts or other information management specialists; (5) clinicians with expertise in brain injury; (6) research scientists with experience conducting brain research or utilizing surveillance systems for scientific research purposes; (7) medical facilities of the Department of Veterans Affairs; and (8) behavioral health centers. (e) Grants The Secretary may award grants to, or enter into contracts or cooperative agreements with, public or private nonprofit entities to carry out activities under this section. (f) Coordination with other federal agencies Subject to subsection (h), the Secretary shall make information and analysis in the National Traumatic Brain Injury Surveillance System available, as appropriate, to Federal departments and agencies, such as the National Institutes of Health, the Health Resources and Services Administration, the Food and Drug Administration, the Centers for Medicare & Medicaid Services, the Agency for Healthcare Research and Quality, the Department of Education, the Department of Veterans Affairs, and the Department of Defense. (g) Public access Subject to subsection (h), the Secretary shall make information and analysis in the National Traumatic Brain Injury Surveillance System available, as appropriate, to the public, including researchers. (h) Privacy The Secretary shall ensure that privacy and security protections applicable to the National Traumatic Brain Injury Surveillance System are at least as stringent as the privacy and security protections under HIPAA privacy and security law, including nondisclosure of personally identifiable information. (i) Report Not later than 2 years after the date of enactment of this Act, the Secretary shall submit a report to the Congress concerning the implementation of this section. Such report shall include information on— (1) the development and maintenance of the National Traumatic Brain Injury Surveillance System; (2) the type of information collected and stored in the System; (3) the use and availability of such information, including guidelines for such use; and (4) the use and coordination of databases that collect or maintain information on traumatic brain injury. (j) Definition In this Act: (1) National health association The term national health association means a national nonprofit organization with chapters, other affiliated organizations, or networks in States throughout the United States. (2) HIPAA privacy and security law The term HIPAA privacy and security law has the meaning given to that term in section 3009 of the Public Health Service Act (42 U.S.C. 300jj–19). (3) Personally identifiable information The term personally identifiable information means information which can be used to distinguish or trace an individual’s identity (such as their name, social security number, or biometric records) either alone or when combined with other personal or identifying information which is linked or linkable to a specific individual (such as date of birth, place of birth, and mother’s maiden name). (4) Secretary The term Secretary means the Secretary of Health and Human Services. (5) Surveillance The term surveillance means the ongoing, systematic collection, analysis, interpretation, and dissemination of data (other than personally identifiable information) regarding a health-related event for use in public health action to reduce morbidity and mortality and to improve health. (6) Traumatic brain injury The term traumatic brain injury means an injury to the head arising from blunt or penetrating trauma or from acceleration or deceleration forces associated with one or more of the following: decreased level of consciousness, amnesia, objective neurologic or neuropsychological abnormalities, skull fractures, diagnosed intracranial lesions, or head injury listed as a cause of death in the death certificate. (k) Authorization of appropriations To carry out this Act, there are authorized to be appropriated such sums as may be necessary.