Last data update: Mar 10, 2025. (Total: 48852 publications since 2009)
Records 1-22 (of 22 Records) |
Query Trace: Kaufmann R[original query] |
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2015 United States Public Health Service optimal fluoride level adherence and operation among adjusting water systems in 40 states: 2016–2021
Boehmer TJ , Hamilton EK , Lesaja S , Thomas B , Espinoza L , Kaufmann R , Ladva CN . AWWA Water Sci 2024 6 (6) In 2015, the United States Public Health Service (USPHS) set a target fluoride level for drinking water at 0.7 mg/L to maximize oral health benefits while minimizing any potential harms. Using water fluoridation operational data reported by water systems to the Centers for Disease Control and Prevention (CDC) Water Fluoridation Reporting System (WFRS) during 2016–2021, this study assesses how water systems performed around this target. The authors summarize completeness of data reporting, assess the distribution of monthly average fluoride readings (MAFR) values, and evaluate precision in maintaining fluoride levels. About 69% of adjusting systems provided data, with an average completeness of 63.8% among them. MAFR mean was 0.71 mg/L (SD: 0.20 mg/L), indicating that water systems have primarily adopted the USPHS target. About 76% of MAFRs fell ± 0.1 mg/L around the reporting system point's mean, indicating feasibility in maintaining precision around a target. State programs and water systems could work together to improve data quality and educate operators on best practices. Published 2024. This article is a U.S. Government work and is in the public domain in the USA. |
Real-world data versus probability surveys for estimating health conditions at the state level
Marker DA , Hilton C , Zelko J , Duke J , Rolka D , Kaufmann R , Boyd R . J Surv Stat Methodol 2024 12 (5) 1515-1530 ![]() Government statistical offices worldwide are under pressure to produce statistics rapidly and for more detailed geographies, to compete with unofficial estimates available from web-based big data sources or from private companies. Commonly suggested sources of improved health information are electronic health records and medical claims data. These data sources are collectively known as real-world data (RWD) because they are generated from routine health care processes, and they are available for millions of patients. It is clear that RWD can provide estimates that are more timely and less expensive to produce—but a key question is whether or not they are very accurate. To test this, we took advantage of a unique health data source that includes a full range of sociodemographic variables and compared estimates using all of those potential weighting variables versus estimates derived when only age and sex are available for weighting (as is common with most RWD sources). We show that not accounting for other variables can produce misleading and quite inaccurate health estimates. © 2024 American Association for Public Opinion Research. All rights reserved. |
Chronic disease mapping, an important strategy and tool for health promotion
Hacker K , Kaufmann R . Prev Chronic Dis 2024 21 E28 |
Modernizing CDC's Practices and Culture for Better Data Sharing, Impact, and Transparency
Wiltz JL , Lee B , Kaufmann R , Carney TJ , Davis K , Briss PA . Prev Chronic Dis 2024 21 E18 |
A new type 2 diabetes microsimulation model to estimate long-term health outcomes, costs, and cost-effectiveness
Hoerger TJ , Hilscher R , Neuwahl S , Kaufmann MB , Shao H , Laxy M , Cheng YJ , Benoit S , Chen H , Anderson A , Craven T , Yang W , Cintina I , Staimez L , Zhang P . Value Health 2023 26 (9) 1372-1380 OBJECTIVE: To develop a microsimulation model to estimate the health effects, costs, and cost-effectiveness of public health and clinical interventions for preventing/managing type 2 diabetes. METHODS: We combined newly developed equations for complications, mortality, risk factor progression, patient utility, and cost-all based on U.S. studies-in a microsimulation model. We performed internal and external validation of the model. To demonstrate the model's utility, we predicted remaining life-years, quality-adjusted life-years (QALYs), and lifetime medical cost for a representative cohort of 10,000 U.S. adults with type 2 diabetes. We then estimated the cost-effectiveness of reducing HbA1c from 9% to 7% among adults with type 2 diabetes, using low-cost, generic, oral medications. RESULTS: The model performed well in internal validation; the average absolute difference between simulated and observed incidence for 17 complications was less than 8%. In external validation, the model was better at predicting outcomes in clinical trials than in observational studies. The cohort of U.S. adults with type 2 diabetes was projected to have an average of 19.95 remaining life-years (from mean age 61), incur $187,729 in discounted medical costs, and accrue 8.79 discounted QALYs. The intervention to reduce HbA1c increased medical costs by $1,256 and QALYs by 0.39, yielding an incremental cost-effectiveness ratio of $9,103 per QALY. CONCLUSIONS: Using equations exclusively derived from U.S. studies, this new microsimulation model achieves good prediction accuracy in U.S. POPULATIONS: The model can be used to estimate the long-term health impact, costs, and cost-effectiveness of interventions for type 2 diabetes in the United States. |
IPVS policy statement on HPV nucleic acid testing guidance for those utilising/considering HPV as primary precancer screening: Quality assurance and quality control issues
Garland SM , Iftner T , Cuschieri K , Kaufmann AM , Arbyn M , de Sanjose S , Poljak M , Dillner J , Unger ER . J Clin Virol 2022 159 105349 We advise that only clinically validated HPV assays which have fulfilled internationally accepted performance criteria be used for primary cervical screening. Further, assays should be demonstrated to be fit for purpose in the laboratory in which they will ultimately be performed, and quality materials manuals and frameworks will be helpful in this endeavor. Importantly, there is a fundamental shortage of well validated, low-cost, low complexity HPV tests that have demonstrated utility in a near-patient setting; representing a significant challenge and focus for future development in order to reach the WHO's goal of eliminating cervical cancer. |
The association between mosaicism type and cognitive and behavioral functioning among males with fragile X syndrome.
Meng L , Kaufmann WE , Frye RE , Ong K , Kaminski JW , Velinov M , Berry-Kravis E . Am J Med Genet A 2021 188 (3) 858-866 ![]() Mosaicism in fragile X syndrome (FXS) refers to two different FMR1 allele variations: size mosaicism represents different numbers of CGG repeats between the two alleles, such that in addition to a full mutation allele there is an allele in the normal or premutation range of CGG repeats, while methylation mosaicism indicates whether a full-mutation allele is fully or partially methylated. The present study explored the association between mosaicism type and cognitive and behavioral functioning in a large sample of males 3 years and older (n = 487) with FXS, participating in the Fragile X Online Registry with Accessible Research Database. Participants with methylation mosaicism were less severely cognitively affected as indicated by a less severe intellectual disability rating, higher intelligence quotient and adaptive behavior score, and lower social impairment score. In contrast, the presence of size mosaicism was not significantly associated with better cognitive and behavioral outcomes than full mutation. Our findings suggest that methylation mosaicism is associated with better cognitive functioning and adaptive behavior and less social impairment. Further research could assess to what extent these cognitive and behavioral differences depend on molecular diagnostic methods and the impact of mosaicism on prognosis of individuals with FXS. © 2021 Wiley Periodicals LLC. |
Validation of the prevention impacts simulation model (PRISM)
Yarnoff B , Honeycutt A , Bradley C , Khavjou O , Bates L , Bass S , Kaufmann R , Barker L , Briss P . Prev Chronic Dis 2021 18 E09 INTRODUCTION: Demonstrating the validity of a public health simulation model helps to establish confidence in the accuracy and usefulness of a model's results. In this study we evaluated the validity of the Prevention Impacts Simulation Model (PRISM), a system dynamics model that simulates health, mortality, and economic outcomes for the US population. PRISM primarily simulates outcomes related to cardiovascular disease but also includes outcomes related to other chronic diseases that share risk factors. PRISM is openly available through a web application. METHODS: We applied the model validation framework developed independently by the International Society of Pharmacoeconomics and Outcomes Research and the Society for Medical Decision Making modeling task force to validate PRISM. This framework included model review by external experts and quantitative data comparison by the study team. RESULTS: External expert review determined that PRISM is based on up-to-date science. One-way sensitivity analysis showed that no parameter affected results by more than 5%. Comparison with other published models, such as ModelHealth, showed that PRISM produces lower estimates of effects and cost savings. Comparison with surveillance data showed that projected model trends in risk factors and outcomes align closely with secular trends. Four measures did not align with surveillance data, and those were recalibrated. CONCLUSION: PRISM is a useful tool to simulate the potential effects and costs of public health interventions. Results of this validation should help assure health policy leaders that PRISM can help support community health program planning and evaluation efforts. |
Case management and capacity building to enhance hepatitis C treatment uptake at community health centers in a large urban setting
Boodram B , Kaufmann M , Aronsohn A , Hamlish T , Peregrine Antalis E , Kim K , Wolf J , Rodriguez I , Millman AJ , Johnson D . Fam Community Health 2020 43 (2) 150-160 An estimated 4.1 million people in the United States are infected with hepatitis C virus (HCV). In 2014, the Hepatitis C Community Alliance to Test and Treat (HepCCATT) collaborative was formed to address hepatitis C in Chicago. From 2014 to 2017, the HepCCATT Case Management Program case managed 181 HCV-infected people and performed on-site capacity building at a 6-site community health center (CHC) that produced codified protocols, which were translated into a telehealth program to build capacity within CHCs to deliver hepatitis C care. HepCCATT's innovative approach to addressing multilevel barriers is a potential model for increasing access to hepatitis C care and treatment. |
Analysing detection of chronic diseases with prolonged sub-clinical periods: modelling and application to hypertension in the U.S
Brinks R , Kaufmann S , Hoyer A , Gregg EW , Saal J . BMC Med Res Methodol 2019 19 (1) 213 BACKGROUND: We recently introduced a system of partial differential equations (PDEs) to model the prevalence of chronic diseases with a possibly prolonged state of asymptomatic, undiagnosed disease preceding a diagnosis. Common examples for such diseases include coronary heart disease, type 2 diabetes or cancer. Widespread application of the new method depends upon mathematical treatment of the system of PDEs. METHODS: In this article, we study the existence and the uniqueness of the solution of the system of PDEs. To demonstrate the usefulness and importance of the system, we model the age-specific prevalence of hypertension in the US 1999-2010. RESULTS: The examinations of mathematical properties provide a way to solve the systems of PDEs by the method of characteristics. In the application to hypertension, we obtain a good agreement between modeled and surveyed age-specific prevalences. CONCLUSIONS: The described system of PDEs provides a practical way to examine the epidemiology of chronic diseases with a state of undiagnosed disease preceding a diagnosis. |
Control of lead sources in the United States, 1970-2017: Public health progress and current challenges to eliminating lead exposure
Dignam T , Kaufmann RB , LeStourgeon L , Brown MJ . J Public Health Manag Pract 2019 25 S13-s22 CONTEXT: During the past 45 years, exposure to lead has declined dramatically in the United States. This sustained decline is measured by blood and environmental lead levels and achieved through control of lead sources, emission reductions, federal regulations, and applied public health efforts. OBJECTIVE: Explore regulatory factors that contributed to the decrease in exposure to lead among the US population since 1970. DESIGN/SETTING: We present historical information about the control of lead sources and the reduction of emissions through regulatory and selected applied public health efforts, which have contributed to decreases in lead exposure in the United States. Sources of lead exposure, exposure pathways, blood lead measurements, and special populations at risk are described. RESULTS: From 1976-1980 to 2015-2016, the geometric mean blood lead level (BLL) of the US population aged 1 to 74 years dropped from 12.8 to 0.82 mug/dL, a decline of 93.6%. Yet, an estimated 500 000 children aged 1 to 5 years have BLLs at or above the blood lead reference value of 5 microg/dL established by the Centers for Disease Control and Prevention. Low levels of exposure can lead to adverse health effects. There is no safe level of lead exposure, and child BLLs less than 10 mug/dL are known to adversely affect IQ and behavior. When the exposure source is known, approximately 95% of BLLs of 25 microg/dL or higher are work-related among US adults. Despite much progress in reducing exposure to lead in the United States, there are challenges to eliminating exposure. CONCLUSIONS: There are future challenges, particularly from the inequitable distribution of lead hazards among some communities. Maintaining federal, state, and local capacity to identify and respond to populations at high risk can help eliminate lead exposure as a public health problem. The results of this review show that the use of strong evidence-based programs and practices, as well as regulatory authority, can help control or eliminate lead hazards before children and adults are exposed. |
Sodium hypochlorite dosage for household and emergency water treatment: updated recommendations
Wilhelm N , Kaufmann A , Blanton E , Lantagne D . J Water Health 2018 16 (1) 112-125 Household water treatment with chlorine can improve the microbiological quality of household water and reduce diarrheal disease. We conducted laboratory and field studies to inform chlorine dosage recommendations. In the laboratory, reactors of varying turbidity (10-300 NTU) and total organic carbon (0-25 mg/L addition) were created, spiked with Escherichia coli, and dosed with 3.75 mg/L sodium hypochlorite. All reactors had >4 log reduction of E. coli 24 hours after chlorine addition. In the field, we tested 158 sources in 22 countries for chlorine demand. A 1.88 mg/L dosage for water from improved sources of <5 or <10 NTU turbidity met free chlorine residual criteria (</=2.0 mg/L at 1 hour, >/=0.2 mg/L at 24 hours) 91-94% and 82-87% of the time at 8 and 24 hours, respectively. In unimproved water source samples, a 3.75 mg/L dosage met relaxed criteria (</=4.0 mg/L at 1 hour, >/=0.2 mg/L after 24 hours) 83% and 65% of the time after 8 and 24 hours, respectively. We recommend water from improved/low turbidity sources be dosed at 1.88 mg/L and used within 24 hours, and from unimproved/higher turbidity sources be dosed at 3.75 mg/L and consumed within 8 hours. Further research on field effectiveness of chlorination is recommended. |
Barriers to treatment access for chronic hepatitis C virus infection: A case series
Millman AJ , Ntiri-Reid B , Irvin R , Kaufmann MH , Aronsohn A , Duchin JS , Scott JD , Vellozzi C . Top Antivir Med 2017 25 (3) 110-113 Restrictive policies on access to new, curative hepatitis C treatments represent a substantial barrier to treating patients infected with hepatitis C. This case series demonstrates challenges experienced by patients and practitioners in accessing these treatments and highlights several strategies for navigating the treatment preauthorization process. |
FORWARD: A Registry and Longitudinal Clinical Database to Study Fragile X Syndrome.
Sherman SL , Kidd SA , Riley C , Berry-Kravis E , Andrews HF , Miller RM , Lincoln S , Swanson M , Kaufmann WE , Brown WT . Pediatrics 2017 139 S183-S193 ![]() Background and objective: Advances in the care of patients with fragile X syndrome (FXS) have been hampered by lack of data. This deficiency has produced fragmentary knowledge regarding the natural history of this condition, healthcare needs, and the effects of the disease on caregivers. To remedy this deficiency, the Fragile X Clinic and Research Consortium was established to facilitate research. Through a collective effort, the Fragile X Clinic and Research Consortium developed the Fragile X Online Registry With Accessible Research Database (FORWARD) to facilitate multisite data collection. This report describes FORWARD and the way it can be used to improve health and quality of life of FXS patients and their relatives and caregivers. Methods: FORWARD collects demographic information on individuals with FXS and their family members (affected and unaffected) through a 1-time registry form. The longitudinal database collects clinician- and parent-reported data on individuals diagnosed with FXS, focused on those who are 0 to 24 years of age, although individuals of any age can participate. Results: The registry includes >2300 registrants (data collected September 7, 2009 to August 31, 2014). The longitudinal database includes data on 713 individuals diagnosed with FXS (data collected September 7, 2012 to August 31, 2014). Longitudinal data continue to be collected on enrolled patients along with baseline data on new patients. Conclusions: FORWARD represents the largest resource of clinical and demographic data for the FXS population in the United States. These data can be used to advance our understanding of FXS: the impact of cooccurring conditions, the impact on the day-today lives of individuals living with FXS and their families, and short-term and long-term outcomes. |
Autism Spectrum Disorder in Fragile X Syndrome: Cooccurring Conditions and Current Treatment.
Kaufmann WE , Kidd SA , Andrews HF , Budimirovic DB , Esler A , Haas-Givler B , Stackhouse T , Riley C , Peacock G , Sherman SL , Brown WT , Berry-Kravis E . Pediatrics 2017 139 S194-S206 ![]() Background and objective: Individuals with fragile X syndrome (FXS) are frequently codiagnosed with autism spectrum disorder (ASD). Most of our current knowledge about ASD in FXS comes from family surveys and small studies. The objective of this study was to examine the impact of the ASD diagnosis in a large clinic-based FXS population to better inform the care of people with FXS. Methods: The study employed a data set populated by data from individuals with FXS seen at specialty clinics across the country. The data were collected by clinicians at the patient visit and by parent report for nonclinical and behavioral outcomes from September 7, 2012 through August 31, 2014. Data analyses were performed by using chi2 tests for association, t tests, and multiple logistic regression to examine the association between clinical and other factors with ASD status. Results: Half of the males and nearly 20% of females met Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition criteria for current ASD. Relative to the FXS-only group, the FXS with ASD (FXS+ASD) group had a higher prevalence of seizures (20.7% vs 7.6%, P < .001), persistence of sleep problems later in childhood, increased behavior problems, especially aggressive/disruptive behavior, and higher use of alpha-agonists and antipsychotics. Behavioral services, including applied behavior analysis, appeared to be underused in children with FXS+ASD (only 26% and 16% in prekindergarten and school-age periods, respectively) relative to other populations with idiopathic ASD. Conclusions: These findings confirm among individuals with FXS an association of an ASD diagnosis with important cooccurring conditions and identify gaps between expected and observed treatments among individuals with FXS+ASD. |
Inhalational chlorine injuries at public aquatic venues - California, 2008-2015
Wilken JA , DiMaggio M , Kaufmann M , O'Connor K , Smorodinsky S , Armatas C , Barreau T , Kreutzer R , Ancheta L . MMWR Morb Mortal Wkly Rep 2017 66 (19) 498-501 In June 2015, personnel from California's Contra Costa Health Services Environmental Health and Hazardous Materials (hazmat) divisions were alerted to a possible chemical release at a swimming pool in an outdoor municipal water park. Approximately 50 bathers were in the pool when symptoms began; 34 (68%) experienced vomiting, coughing, or eye irritation. Among these persons, 17 (50%) were treated at the scene by Contra Costa's Emergency Medical Services (EMS) and released, and 17 (50%) were transported to local emergency departments; five patients also were evaluated later at an emergency department or by a primary medical provider. Environmental staff members determined that a chemical controller malfunction had allowed sodium hypochlorite and muriatic acid (hydrochloric acid) solutions to be injected into the main pool recirculation line while the recirculation pump was off; when the main recirculation pump was restarted, toxic chlorine gas (generated by the reaction of concentrated sodium hypochlorite and muriatic acid) was released into the pool. A review of 2008-2015 California pesticide exposure records identified eight additional such instances of toxic chlorine gas releases at public aquatic venues caused by equipment failure or human error that sickened 156 persons. Chemical exposures at public aquatic venues can be prevented by proper handling, storage, and monitoring of pool chemicals; appropriate equipment operation and maintenance; training of pool operators and staff members on pool chemical safety; and reporting of chemical exposures. |
Practice-based evidence in Community Guide Systematic Reviews
Vaidya N , Thota AB , Proia KK , Jamieson S , Mercer SL , Elder RW , Yoon P , Kaufmann R , Zaza S . Am J Public Health 2017 107 (3) e1-e8 OBJECTIVES: To assess the relative contributions and quality of practice-based evidence (PBE) and research-based evidence (RBE) in The Guide to Community Preventive Services (The Community Guide). METHODS: We developed operational definitions for PBE and RBE in which the main distinguishing feature was whether allocation of participants to intervention and comparison conditions was under the control of researchers (RBE) or not (PBE). We conceptualized a continuum between RBE and PBE. We then categorized 3656 studies in 202 reviews completed since The Community Guide began in 1996. RESULTS: Fifty-four percent of studies were PBE and 46% RBE. Community-based and policy reviews had more PBE. Health care system and programmatic reviews had more RBE. The majority of both PBE and RBE studies were of high quality according to Community Guide scoring methods. CONCLUSIONS: The inclusion of substantial PBE in Community Guide reviews suggests that evidence of adequate rigor to inform practice is being produced. This should increase stakeholders' confidence that The Community Guide provides recommendations with real-world relevance. Limitations in some PBE studies suggest a need for strengthening practice-relevant designs and external validity reporting standards. (Am J Public Health. Published online ahead of print January 19, 2017: e1-e8. doi:10.2105/AJPH.2016.303583). |
Transforming evidence generation to support health and health care decisions
Califf RM , Robb MA , Bindman AB , Briggs JP , Collins FS , Conway PH , Coster TS , Cunningham FE , De Lew N , DeSalvo KB , Dymek C , Dzau VJ , Fleurence RL , Frank RG , Gaziano JM , Kaufmann P , Lauer M , Marks PW , McGinnis JM , Richards C , Selby JV , Shulkin DJ , Shuren J , Slavitt AM , Smith SR , Washington BV , White PJ , Woodcock J , Woodson J , Sherman RE . N Engl J Med 2016 375 (24) 2395-2400 Making better choices about health and health care requires the best possible evidence. Unfortunately, many of the decisions made today in our health care system are not supported by high-quality evidence1-4 derived from randomized, controlled trials or well-designed observational studies. But as rich, diverse sources of digital data become widely available for research and as analytical tools continue to grow in power and sophistication, the research and health care communities now have the opportunity to quickly and efficiently generate the scientific evidence needed to support improved decision making about health and health care. | The pursuit of high-quality, data-driven evidence in no way detracts from the importance of expert opinion and qualitative information as a complementary source of knowledge to inform policy decisions or population and individual choices; in fact, it enhances it. However, we believe there is an opportunity to use qualitative methods to supplement high-quality quantitative data with a more focused approach. |
CDC Grand Rounds: creating a healthier future through prevention of child maltreatment
Saul J , Valle LA , Mercy JA , Turner S , Kaufmann R , Popovic T . MMWR Morb Mortal Wkly Rep 2014 63 (12) 260-3 Child maltreatment is abuse or neglect of a child by a parent or other caregiver that results in potential or actual harm or threats of harm to a child. Maltreatment encompasses both acts of commission (abuse) and omission (neglect). Child maltreatment is divided into four types: 1) physical abuse (e.g., hitting, kicking, shaking, or burning); 2) sexual abuse (e.g., rape or fondling); 3) psychological abuse (e.g., terrorizing or belittling); and 4) neglect, which involves the failure to meet a child's basic physical, emotional, or educational needs (e.g., not providing nutrition, shelter, or medical or mental health care) or the failure to supervise the child in a way that ensures safety (e.g., not taking reasonable steps to prevent injury). In 2012, a total of 1,593 children were reported to have died as a result of maltreatment in the United States. Also in 2012, state child protective service (CPS) agencies received an estimated 3.4 million reports of alleged maltreatment, involving an estimated 6.3 million children. Following the CPS investigation or other response, nearly 700,000 children were confirmed as having been maltreated. However, many cases are never reported to authorities; the actual scope of child maltreatment is greater. For example, data from a nationally representative survey in 2011 of children and adult caregivers (usually parents) suggest that 13.8% of children are maltreated each year and 25.6% experienced maltreatment at some point during childhood. |
Trends in tobacco smoke exposure and blood lead levels among youths and adults in the United States: the National Health and Nutrition Examination Survey, 1999-2008
Richter PA , Bishop EE , Wang J , Kaufmann R . Prev Chronic Dis 2013 10 E213 INTRODUCTION: Tobacco smoke is a source of exposure to thousands of toxic chemicals including lead, a chemical of longstanding public health concern. We assessed trends in blood lead levels in youths and adults with cotinine-verified tobacco smoke exposure by using 10 years of data from the National Health and Nutrition Examination Survey. METHODS: Geometric mean levels of blood lead are presented for increasing levels of tobacco smoke exposure. Regression models for lead included age, race/ethnicity, poverty, survey year, sex, age of home, birth country, and, for adults, alcohol consumption. Lead levels were evaluated for smokers and nonsmokers on the basis of age of residence and occupation. RESULTS: Positive trend tests indicate that a linear relationship exists between smoke exposure and blood lead levels in youths and adults and that secondhand smoke exposure contributes to blood lead levels above the level caused by smoking. CONCLUSION: Youths with secondhand smoke exposure had blood lead levels suggestive of the potential for adverse cognitive outcomes. Despite remediation efforts in housing and the environment and declining smoking rates and secondhand smoke exposure in the United States, tobacco smoke continues to be a substantial source of exposure to lead in vulnerable populations and the population in general. |
Introduction: CDC Health Disparities and Inequalities Report - United States, 2013
Meyer PA , Yoon PW , Kaufmann RB . MMWR Suppl 2013 62 (3) 3-5 This supplement is the second CDC Health Disparities and Inequalities Report (CHDIR). The 2011 CHDIR was the first CDC report to assess disparities across a wide range of diseases, behavioral risk factors, environmental exposures, social determinants, and health-care access (CDC. CDC Health Disparities and Inequalities Report-United States, 2011. MMWR 2011;60[Suppl; January 14, 2011]). The 2013 CHDIR provides new data for 19 of the topics published in 2011 and 10 new topics. When data were available and suitable analyses were possible for the topic area, disparities were examined for population characteristics that included race and ethnicity, sex, sexual orientation, age, disability, socioeconomic status, and geographic location. The purpose of this supplement is to raise awareness of differences among groups regarding selected health outcomes and health determinants and to prompt actions to reduce disparities. The findings in this supplement can be used by practitioners in public health, academia and clinical medicine; the media; the general public; policymakers; program managers; and researchers to address disparities and help all persons in the United States live longer, healthier, and more productive lives. |
Down syndrome: national conference on patient registries, research databases, and biobanks.
Oster-Granite ML , Parisi MA , Abbeduto L , Berlin DS , Bodine C , Bynum D , Capone G , Collier E , Hall D , Kaeser L , Kaufmann P , Krischer J , Livingston M , McCabe LL , Pace J , Pfenninger K , Rasmussen SA , Reeves RH , Rubinstein Y , Sherman S , Terry SF , Siewhitten M , Williams S , McCabe ER , Maddox YT . Mol Genet Metab 2011 104 13-22 ![]() A December 2010 meeting, "Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks," was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole. |
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