The National Children's Study--a proposed plan.
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ABSTRACT:
SUBMITTER: Guttmacher AE
PROVIDER: S-EPMC5101954 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Studying Whole Genomes in the National Children's Study
| PRJNA447885 | ENA
Project description:BackgroundThe InfAct (Information for Action) project is a European Commission Joint Action on Health Information which has promoted the potential role of burden of disease (BoD) approaches to improve the current European Union-Health Information System (EU-HIS). It has done so by raising awareness of the concept, the methods used to calculate estimates and their potential implications and uses in policymaking. The BoD approach is a systematic and scientific effort to quantify and compare the magnitude of health loss due to different diseases, injuries, and risk factors with estimates produced by demographic characteristics and geographies for specific points in time. Not all countries have the resources to undertake such work, and may therefore start with a more restricted objective, e.g., a limited number of diseases, or the use of simple measures of population health such as disease prevalence or life expectancy. The main objective to develop these recommendations was to facilitate those countries planning to start a national burden of disease study.ResultsThese recommendations could be considered as minimum requirements for those countries planning to start a BoD study and includes following elements: (1) Define the objectives of a burden of disease study within the context of your country, (2) Identify, communicate and secure the benefits of performing national burden of disease studies, (3) Secure access to the minimum required data sources, (4) Ensure the minimum required capacity and capability is available to carry out burden of disease study, (5) Establish a clear governance structure for the burden of disease study and stakeholder engagement/involvement, (6) Choose the appropriate methodological approaches and (7) Knowledge translation. These were guided by the results from our survey performed to identify the needs of European countries for BoD studies, a narrative overview from four European countries (Belgium, Germany, The Netherlands and Scotland) and the summary of a comparative study of country health profiles with national health statistics.ConclusionsThese recommendations as minimum requirements would facilitate efforts by those European countries who intend to perform national BoD studies.
| S-EPMC8262070 | biostudies-literature
Project description:The National Children's Study (NCS) evolved in concept and planning to become an integrated systems based initiative to assess a full spectrum of health and capture the environmental factors and other influences that shape the trajectory of child development. The NCS built on prior work in health assessment, epidemiology, logistics, and methodology in order to address the broad goals of its mandate. To develop the specific methods and tools to conduct a study in multiple environments outside conventional health care delivery clinics the NCS invested in new approaches such as informatics, study operations, and the establishment of a Health Measurements Network to provide accurate, cost effective, and scientifically valid data that would be interoperable with data collected by other longitudinal studies around the world as well as with major national and international health improvement initiatives.
| S-EPMC5827357 | biostudies-literature
Project description:The National Children's Study (NCS) is a prospective epidemiological study in the USA tasked with identifying a nationally representative sample of 100,000 children, and following them from their gestation until they are 21 years of age. The objective of the study is to measure environmental and genetic influences on growth, development, and health. Determination of the ancestry of these NCS participants is important for assessing the diversity of study participants and for examining the effect of ancestry on various health outcomes.We estimated the genetic ancestry of a convenience sample of 641 parents enrolled at the 7 original NCS Vanguard sites, by analyzing 30,000 markers on exome arrays, using the 1000 Genomes Project superpopulations as reference populations, and compared this with the measures of self-reported ethnicity and race. For 99% of the individuals, self-reported ethnicity and race agreed with the predicted superpopulation. NCS individuals self-reporting as Asian had genetic ancestry of either South Asian or East Asian groups, while those reporting as either Hispanic White or Hispanic Other had similar genetic ancestry. Of the 33 individuals who self-reported as Multiracial or Non-Hispanic Other, 33% matched the South Asian or East Asian groups, while these groups represented only 4.4% of the other reported categories.Our data suggest that self-reported ethnicity and race have some limitations in accurately capturing Hispanic and South Asian populations. Overall, however, our data indicate that despite the complexity of the US population, individuals know their ancestral origins, and that self-reported ethnicity and race is a reliable indicator of genetic ancestry.
| S-EPMC4053981 | biostudies-literature
Project description:In 2000, the US Congress authorized the National Institutes of Health to conduct a prospective national longitudinal study of environmental influences on children's health and development from birth through 21 years. Several recruitment methodologies were piloted to determine the optimal strategy for a main National Children's Study. After an initial pilot recruitment that used a household enumeration strategy performed poorly, the National Children's Study Vanguard Study developed and evaluated the feasibility, acceptability, and cost of 4 alternate strategies to recruit a large prospective national probability sample of pregnant women and their newborn children. We compare household-based recruitment, provider-based recruitment, direct outreach, and provider-based sampling (PBS) strategies with respect to overall recruitment success, efficiency, cost, and fulfillment of scientific requirements. Although all 5 strategies achieved similar enrollment rates (63%-81%) among eligible women, PBS achieved the highest recruitment success as measured by the ratio of observed-to-expected newborn enrollees per year of 0.99, exceeding those of the other strategies (range: 0.35-0.48). Because PBS could reach the enrollment target through sampling of high volume obstetric provider offices and birth hospitals, it achieved the lowest ratio of women screened to women enrolled and was also the least costly strategy. With the exception of direct outreach, all strategies enrolled a cohort of women whose demographics were similar to county natality data. PBS demonstrated the optimal combination of recruitment success, efficiency, cost, and population representativeness and serves as a model for the assembly of future prospective probability-based birth cohorts.
| S-EPMC5527671 | biostudies-literature
Project description:Few studies have reported the outcome of direct outreach methods for recruitment of research participants in population-based samples. We describe the relationship of outreach strategies that are tailored to specific community factors to recruitment and consent outcomes in 10 National Children's Study direct outreach study locations (all were single counties).Each study center collected data from a target population of women who resided in selected county segments that were sampled based on a geographic area probability sampling design. Based on county characteristics of the 10 study locations, each study center used site-specific marketing approaches (direct mail, mass media, provider referrals, social networking) to recruit study participants. Recruitment success was measured by the number of recruited women as well as by a qualitative assessment of the effectiveness of various recruitment methods.The number of women who consented varied from 67 to 792. The majority of women were pregnant at the time of consent. Community awareness varied from <1% to 70%. Although no significant associations were found between community characteristics and recruitment success, we found that certain types of outreach strategies enhanced recruitment.In a small sample of 10 US counties, recruitment success was not associated with community characteristics. It was, however, associated with certain types of outreach strategies that may be more effective in close-knit communities.
| S-EPMC4878110 | biostudies-literature
Project description:One in 5 Americans experiences disability that affects daily function because of impairments in mobility, impairments in cognitive function, sensory impairment, or communication impairment. The need for rehabilitation strategies to optimize function and reduce disability is a clear priority for research to address this public health challenge. The National Institutes of Health (NIH) recently published a Research Plan on Rehabilitation that provides a set of priorities to guide the field over the next 5 years. The plan was developed with input from multiple institutes and centers within the NIH, the National Advisory Board for Medical Rehabilitation Research, and the public. This article provides an overview of the need for this research plan, an outline of its development, and a listing of six priority areas for research.
| S-EPMC5397097 | biostudies-literature
Project description:The possible impacts of the European Commission's proposed North Sea Multi-Annual Plan are evaluated in terms of its likely outcomes to achieve management objectives for fishing pressure, species' biomass, fishery yield, the landed value of key species and ecosystem objectives. The method applies management strategy evaluation procedures that employ an ecosystem model of the North Sea and its fisheries as the operating model. Taking five key dimensions of the proposed plan, it identifies those areas that are key to its successful performance. Overwhelmingly, choices in the options for the implementation of regulatory measures on discarding practices outweigh the effects of options related to fishing within ranges associated with 'pretty good yield', the way that biomass conservation safeguard mechanisms are applied and the timeframe for achieving fishing mortality targets. The impact of safeguard options and ranges in fishing mortality become important only when stock biomass is close to its reference points. The fifth dimension-taking into account wider conservation and ecosystem objectives-reveals that discard policy has a big impact on conservation species, but also that the type of harvest control rule can play an important role in limiting risks to stocks by 'applying the brakes' early. The consequences to fisheries however is heightened risk to their viability, thus exposing the sustainability trade-offs faced with balancing societal pressures for blue growth and enhanced conservation. It also reveals the wider ecosystem impacts that emphasise the connectivity between the demersal and pelagic realms, and thus, the importance of not treating the demersal NSMAP in isolation from other management plans. When stocks are below their biomass reference points, low F strategies lead to better long term economic performance, but for stocks consistently above biomass reference points, high F strategies lead to higher long term value. Nephrops and whiting often show contradictory responses to the strategies because changes in their predators abundance affects their abundance and success of their fisheries.
| S-EPMC5749736 | biostudies-literature
Project description:OBJECTIVE:In 2009, the National Children's Study (NCS) Vanguard Study tested the feasibility of household-based recruitment and participant enrollment by using a birth rate probability sample. In 2010, the NCS Program Office launched 3 alternative recruitment methods. We tested whether direct outreach (DO) recruitment could be a more efficient strategy to recruit women of child-bearing age. METHODS:The NCS DO recruitment approach recruited women, 18 to 49 years, who were pregnant or trying to conceive using passive recruitment methods emphasizing broad community outreach and engagement to create study awareness. Study mailings to listed households included a pregnancy screening questionnaire to identify potentially eligible women from selected neighborhoods to contact the study center. Unique features of this recruitment approach included the following: (1) expansion of selected neighborhoods to maximize potential participant recruitment and enrollment while minimizing in-person participant contact and (2) offering 2 levels of study participation distinguished by data collection intensity. RESULTS:Ten study centers listed 255?475 geographically eligible households for contact representing, on average, 3.3% of households per Primary Sampling Unit. A total of 19?354 women were identified for screening, and 17?421 completed a pregnancy screener representing 6.8% of eligible households. Study-eligible pregnant women were older, more educated, and less likely to be Hispanic than the general population. Only 16% (2786) of 17?421 screened women were study-eligible, and 81.1% of these 2786 women consented to participate. CONCLUSIONS:Although feasible, the DO approach recruited a sample of study-eligible pregnant women significantly different from the population. This recruitment approach was labor intensive for the yield of enrolled women.
| S-EPMC4878107 | biostudies-literature
Project description:In 2009, the National Children's Study (NCS) Vanguard Study tested the feasibility of household-based recruitment and participant enrollment using a birth-rate probability sample. In 2010, the NCS Program Office launched 3 additional recruitment approaches. We tested whether provider-based recruitment could improve recruitment outcomes compared with household-based recruitment.The NCS aimed to recruit 18- to 49-year-old women who were pregnant or at risk for becoming pregnant who lived in designated geographic segments within primary sampling units, generally counties. Using provider-based recruitment, 10 study centers engaged providers to enroll eligible participants at their practice. Recruitment models used different levels of provider engagement (full, intermediate, information-only).The percentage of eligible women per county ranged from 1.5% to 57.3%. Across the centers, 3371 potential participants were approached for screening, 3459 (92%) were screened and 1479 were eligible (43%). Of those 1181 (80.0%) gave consent and 1008 (94%) were retained until delivery. Recruited participants were generally representative of the county population.Provider-based recruitment was successful in recruiting NCS participants. Challenges included time-intensity of engaging the clinical practices, differential willingness of providers to participate, and necessary reliance on providers for participant identification. The vast majority of practices cooperated to some degree. Recruitment from obstetric practices is an effective means of obtaining a representative sample.
| S-EPMC4878111 | biostudies-literature