The National Children's Study--a proposed plan.
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ABSTRACT:
SUBMITTER: Guttmacher AE
PROVIDER: S-EPMC5101954 | biostudies-literature | 2013 Nov
REPOSITORIES: biostudies-literature
Publications
The National Children's Study--a proposed plan.
Guttmacher Alan E AE Hirschfeld Steven S Collins Francis S FS
The New England journal of medicine 20131101 20
With its coordinated longitudinal biologic, environmental-exposure, and phenotypic data and samples, the National Children's Study is aiming to provide an important resource for understanding children's growth, development, and health. ...[more]
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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: Not available
| S-EPMC11919420 | biostudies-literature
Project description:ObjectiveFew 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).MethodsEach 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.ResultsThe 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.ConclusionsIn 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: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:PAPER 1:"Identification of novel subgroups of high-risk pediatric precursor B acute lymphoblastic leukemia (B-ALL) by unsupervised microarray analysis: clinical correlates and therapeutic implications. A Children's Oncology Group (COG) study." ABSTRACT We examined gene expression profiles of pre-treatment specimens from 207 patients from the COG P9906 study to identify signatures of children with high risk B-precursor acute lymphoblastic leukemia (ALL) and to determine whether the resulting clusters are associated with either specific clinical features or treatment response characteristics. Four unsupervised clustering methods were utilized to classify patients into similar groups. The different clustering algorithms showed significant overlap in cluster membership. Two clusters contained all cases with either t(1;19)(q23;p13) translocations or MLL rearrangements. The other six clusters were novel and had no recurring chromosomal abnormalities or distinctive clinical features. Members of two of these novel clusters had significant survival differences when compared to the overall 4-year relapse-free survival (RFS) of 61%. These included clusters of patients with either significantly better (94.7%) or worse (21.0%) RFS at 4 years. Children of Hispanic/Latino ethnicity were disproportionately present in the poor outcome cluster. The poor outcome cluster represents a novel biologically distinctive subset of B-precursor ALL that may occur at least as frequently as BCR/ABL. Further molecular characterization of this cluster may lead to the discovery of genomic abnormalities that can be targeted to improve the currently dismal outcome for children with this gene signature. The Sample data have also been used in another study: PAPER 2: "Gene expression classifiers for minimal residual disease and relapse free survival improve outcome prediction and risk classification in children with high risk acute lymphoblastic leukemia. A Children's Oncology Group study". ABSTRACT Background. Nearly 25% of children with B-precursor ALL present with "high-risk" disease (HR-ALL) that is resistant to current therapies. Gene expression profiling may yield molecular classifiers for outcome prediction that can be used to improve risk classification and therapeutic targeting. Methods. Expression profiles were obtained in pre-treatment leukemic samples from 207 uniformly treated children with HR-ALL. Relapse free survival (RFS) was 61% at 4 years and flow cytometric measures of minimal residual disease (MRD) at the end of induction (day 29) were predictive of outcome (P<0.001). Molecular classifiers predictive of RFS and MRD were developed using extensive cross-validation procedures. Results. A 38 gene molecular risk classifier predictive of RFS (MRC-RFS) distinguished two groups in HR-ALL with different relapse risks: low (4 yr RFS: 81%, n=109) vs. high (4 yr RFS: 50%, n=98) (P<0.0001). In multivariate analysis, the best predictor combined MRC-RFS and day 29 flow MRD data, classifying children into low (87% RFS), intermediate (62% RFS), or high risk (29% RFS) groups (P<0.0001). A 21 gene molecular classifier predictive of MRD could effectively substitute for day 29 flow MRD, yielding a combined classifier that similarly distinguished three risk groups at pre-treatment (low: 82% RFS; intermediate: 63% RFS; and high risk: 45% RFS) (P<0.0001). This combined molecular classifier was further validated on an independent cohort of 84 children with HR-ALL (P = 0.006). Conclusions. Molecular classifiers predictive of RFS and MRD can be used to distinguish distinct prognostic groups within HR-ALL, significantly improving risk classification schemes and the ability to prospectively identify children at diagnosis who will respond to or fail current treatment regimens. NOTE: Due to Children's Oncology Group (COG) restrictions, outcome and MRD data cannot be provided as part of the covariate data for this dataset at the present time. If you would like to arrange individual access to this data, please contact COG or the PI of this study, Dr. Cheryl Willman, at the University of New Mexico Cancer Center (cwillman@unm.edu) to arrange a collaboration.
2009-06-25 | GSE11877 | GEO
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