,i #aacth ,,congress #b;d ,session ,h4 ,r4 #dbea ,,in ,,the ,,house ,,of ,,representatives ,march #ad1 #bjad ,mr4 ,pascrell 7for himself and ,mr4 ,rooney7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,a ,,bill ,to direct the ,secretary of ,health and ,human ,services1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 to establish a surveillance system regarding traumatic brain injury1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,national ,traumatic ,brain ,injury ,research and ,treatment ,improvement ,act of #bjad4 #b4 ,findings 7a7 ,findings ,the ,congress finds as follows3 7#a7 ,state data and monitoring systems provide reliable data on injury causes and risk factors1 identify trends in the incidence of traumatic brain injury1 enable the development of cause-specific prevention strategies focused on populations at greatest risk1 and monitor the effectiveness of such strategies4 7#b7 ,since #aiie1 when the ,centers for ,disease ,control and ,prevention published ,guidelines for ,surveillance of ,central ,nervous ,system ,injury1 additional causes of traumatic brain injury have emerged3 military-related traumatic brain injuries2 sports-related concussions2 traffic injuries resulting from texting while driving2 and increasing numbers of falls-related traumatic brain injuries among older adults4 7#c7 ,in their #bjac report1 ,sports-,related ,concussions in ,youth3 ,improving the ,science1 ,changing the ,culture1 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 spectrum4 ,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 concussions1 including those in youth ages #e to #ba1 taking into account ,federal efforts to collect information on traumatic brain injury4 7#d7 ,traumatic brain injury is a substantial public health problem among older persons4 ,as the population of older persons continues to grow in the ,united ,states1 the need to design and implement proven and cost-effective prevention measures that focus on the leading causes of traumatic brain injury becomes more urgent4 7#e7 ,in order to implement this ,act1 the ,centers for ,disease ,control and ,prevention needs to collaborate with ,federal agencies reporting military-related traumatic brain injuries1 school systems reporting traumatic brain injuries1 ,medicaid and other ,federal programs1 and ,state agencies4 #c4 ,establishing requirements to improve the research and treatment of traumatic brain injury 7a7 ,in general ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 shall-- 7#a7 evaluate existing surveillance and data collections systems that track the incidence and circumstances of traumatic brain injury1 including concussion2 7#b7 not later than #i months after the date of enactment of this ,act1 submit a report to the ,congress outlining the findings of the evaluation under paragraph 7#a72 and 7#c7 establish a statistically sound1 scientifically credible1 integrated surveillance system regarding traumatic brain injury1 to be known as the ,national ,traumatic ,brain ,injury ,surveillance ,system4 7b7 ,research ,the ,secretary shall ensure that the ,national ,traumatic ,brain ,injury ,surveillance ,system is designed in a manner that facilitates further research on brain injury4 7c7 ,content ,in carrying out subsection 7a71 the ,secretary-- 7#a7 shall provide for the collection and storage of information 7excluding personally identifiable information7 on the incidence and prevalence of traumatic brain injury1 including concussion1 in the ,united ,states across the lifespan2 7#b7 to the extent practicable1 shall provide for the collection and storage of other available information 7excluding personally identifiable information7 on traumatic brain injury1 such as information concerning demographics and other information associated with the incidence of a traumatic brain injury1 such as-- 7,a7 age2 7,b7 race and ethnicity2 7,c7 sex2 7,d7 geographic location2 7,e7 history of head injury 7including injury type and the approximate date of injury72 7,f7 pre-existing conditions1 such as learning disabilities and attention deficit hyperactivity disorder2 and 7,g7 co-occurring issues1 such as substance abuse or post-traumatic stress disorder2 7#c7 to the extent practicable1 shall provide for the collection and storage of information relevant to analysis on traumatic brain injury1 such as information concerning-- 7,a7 impact location on the body and nature of the impact2 7,b7 qualifications of personnel making the traumatic brain injury diagnosis2 7,c7 assessment tool used to make the diagnosis2 7,d7 signs and symptoms consistent with a head injury2 7,e7 sport or activity and the level of competition 7if a sports-related activity72 7,f7 use of protective equipment and impact monitoring devices2 and 7,g7 severity of the traumatic brain injury2 and 7#d7 may address issues identified during the consultation process under subsection 7d74 7d7 ,consultation ,in carrying out this section1 the ,secretary shall consult with individuals with appropriate expertise1 including-- 7#a7 epidemiologists with experience in disease surveillance or registries2 7#b7 representatives of national health associations that-- 7,a7 focus on brain injury2 and 7,b7 have demonstrated experience in research1 care1 or patient services2 7#c7 ,state public health agencies2 7#d7 health information technology experts or other information management specialists2 7#e7 clinicians with expertise in brain injury2 7#f7 research scientists with experience conducting brain research or utilizing surveillance systems for scientific research purposes2 7#g7 medical facilities of the ,department of ,veterans ,affairs2 and 7#h7 behavioral health centers4 7e7 ,grants ,the ,secretary may award grants to1 or enter into contracts or cooperative agreements with1 public or private nonprofit entities to carry out activities under this section4 7f7 ,coordination with other federal agencies ,subject to subsection 7h71 the ,secretary shall make information and analysis in the ,national ,traumatic ,brain ,injury ,surveillance ,system available1 as appropriate1 to ,federal departments and agencies1 such as the ,national ,institutes of ,health1 the ,health ,resources and ,services ,administration1 the ,food and ,drug ,administration1 the ,centers for ,medicare ,medicaid ,services1 the ,agency for ,healthcare ,research and ,quality1 the ,department of ,education1 the ,department of ,veterans ,affairs1 and the ,department of ,defense4 7g7 ,public access ,subject to subsection 7h71 the ,secretary shall make information and analysis in the ,national ,traumatic ,brain ,injury ,surveillance ,system available1 as appropriate1 to the public1 including researchers4 7h7 ,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 law1 including nondisclosure of personally identifiable information4 7i7 ,report ,not later than #b years after the date of enactment of this ,act1 the ,secretary shall submit a report to the ,congress concerning the implementation of this section4 ,such report shall include information on-- 7#a7 the development and maintenance of the ,national ,traumatic ,brain ,injury ,surveillance ,system2 7#b7 the type of information collected and stored in the ,system2 7#c7 the use and availability of such information1 including guidelines for such use2 and 7#d7 the use and coordination of databases that collect or maintain information on traumatic brain injury4 7j7 ,definition ,in this ,act3 7#a7 ,national health association ,the term national health association means a national nonprofit organization with chapters1 other affiliated organizations1 or networks in ,states throughout the ,united ,states4 7#b7 ,,hipaa privacy and security law ,the term ,,hipaa privacy and security law has the meaning given to that term in section #cjji of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjj;jj-#ai74 7#c7 ,personally identifiable information ,the term personally identifiable information means information which can be used to distinguish or trace an individual's identity 7such as their name1 social security number1 or biometric records7 either alone or when combined with other personal or identifying information which is linked or linkable to a specific individual 7such as date of birth1 place of birth1 and mother's maiden name74 7#d7 ,secretary ,the term ,secretary means the ,secretary of ,health and ,human ,services4 7#e7 ,surveillance ,the term surveillance means the ongoing1 systematic collection1 analysis1 interpretation1 and dissemination of data 7other than personally identifiable information7 regarding a health-related event for use in public health action to reduce morbidity and mortality and to improve health4 7#f7 ,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 following3 decreased level of consciousness1 amnesia1 objective neurologic or neuropsychological abnormalities1 skull fractures1 diagnosed intracranial lesions1 or head injury listed as a cause of death in the death certificate4 7k7 ,authorization of appropriations ,to carry out this ,act1 there are authorized to be appropriated such sums as may be necessary4