Emerging Challenges in NBS: Benefits and Harms of Receiving Uncertain Prognoses After NBS

NBS 中的新挑战:NBS 后收到不确定预测的好处和坏处

基本信息

  • 批准号:
    10708198
  • 负责人:
  • 金额:
    $ 72.27万
  • 依托单位:
  • 依托单位国家:
    美国
  • 项目类别:
  • 财政年份:
    2022
  • 资助国家:
    美国
  • 起止时间:
    2022-09-21 至 2027-08-31
  • 项目状态:
    未结题

项目摘要

PROJECT SUMMARY While newborn screening (NBS) programs have prevented death and disability for scores of children with inherited disorders over the past 50 years, these programs face significant emerging challenges. Specifically, the NBS system has ushered in an era in which increasing numbers of parents are leaving the NBS experience uncertain about their child's future health. This erosion of prognostic certainty stems from the addition of disorders to NBS panels that have broad phenotypic variability. As a result, a new group of children called “patients in waiting” are literally waiting to see when – or if – they develop signs and symptoms of disease. While society mandates that these children be screened, we have little understanding of the benefits and harms of these uncertain prognoses. Previous studies have provided vital foundational work on the potential harms and benefits for “patients in waiting;” however, little quantitative and no longitudinal population-based data exist to inform our care for these children. This gap has significant ethical and policy implications. From an ethical perspective, it leaves us unsure of the balance of benefits and harms for children who undergo a mandatory public health program days after birth. From a policy perspective, it leads to the addition of disorders to mandatory state NBS panel based on incomplete data. The proposed project’s overall objective is to close this gap by examining the scope and magnitude of benefits and harms on parents and their children who receive an uncertain prognosis after NBS. We will accomplish the project objective through a longitudinal multistate cohort study of parents of “patients in waiting,” with the following aims: 1) To determine the longitudinal scope and magnitude of benefits and harms on parents and their children who have received an uncertain prognosis after NBS; 2) To elucidate the longitudinal experiences of parents and their children who have received an uncertain prognosis after NBS; 3) To develop recommendations for NBS programs that will inform policies and practices to maximize benefit and minimize harm to children who receive an uncertain prognosis after NBS. In summary, this project will provide the most comprehensive assessment to date of the benefits and harms of an uncertain prognosis after NBS and ensure that children and their parents continue to receive a net benefit from this successful public health program.
项目总结

项目成果

期刊论文数量(0)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)

数据更新时间:{{ journalArticles.updateTime }}

{{ item.title }}
{{ item.translation_title }}
  • DOI:
    {{ item.doi }}
  • 发表时间:
    {{ item.publish_year }}
  • 期刊:
  • 影响因子:
    {{ item.factor }}
  • 作者:
    {{ item.authors }}
  • 通讯作者:
    {{ item.author }}

数据更新时间:{{ journalArticles.updateTime }}

{{ item.title }}
  • 作者:
    {{ item.author }}

数据更新时间:{{ monograph.updateTime }}

{{ item.title }}
  • 作者:
    {{ item.author }}

数据更新时间:{{ sciAawards.updateTime }}

{{ item.title }}
  • 作者:
    {{ item.author }}

数据更新时间:{{ conferencePapers.updateTime }}

{{ item.title }}
  • 作者:
    {{ item.author }}

数据更新时间:{{ patent.updateTime }}

Aaron J Goldenberg其他文献

Aaron J Goldenberg的其他文献

{{ item.title }}
{{ item.translation_title }}
  • DOI:
    {{ item.doi }}
  • 发表时间:
    {{ item.publish_year }}
  • 期刊:
  • 影响因子:
    {{ item.factor }}
  • 作者:
    {{ item.authors }}
  • 通讯作者:
    {{ item.author }}

{{ truncateString('Aaron J Goldenberg', 18)}}的其他基金

Emerging Challenges in NBS: Benefits and Harms of Receiving Uncertain Prognoses After NBS
NBS 中的新挑战:NBS 后收到不确定预测的好处和坏处
  • 批准号:
    10584779
  • 财政年份:
    2022
  • 资助金额:
    $ 72.27万
  • 项目类别:
Implementing a Novel Consent Process for Biospecimen Research after Newborn Screening in Hospitals Serving Diverse Patients
在为不同患者提供服务的医院进行新生儿筛查后,实施新的生物样本研究同意程序
  • 批准号:
    10704170
  • 财政年份:
    2022
  • 资助金额:
    $ 72.27万
  • 项目类别:
Biobanking at Birth: Parental Attitudes towards the Use of Perinatal Samples
出生时生物样本库:父母对使用围产期样本的态度
  • 批准号:
    8488457
  • 财政年份:
    2012
  • 资助金额:
    $ 72.27万
  • 项目类别:
Biobanking at Birth: Parental Attitudes towards the Use of Perinatal Samples
出生时生物样本库:父母对使用围产期样本的态度
  • 批准号:
    8225867
  • 财政年份:
    2012
  • 资助金额:
    $ 72.27万
  • 项目类别:

相似海外基金

Determining the mechanism of action of cis-acting modifiers on the age of onset of Huntington Disease
确定顺式作用修饰剂对亨廷顿病发病年龄的作用机制
  • 批准号:
    417256
  • 财政年份:
    2019
  • 资助金额:
    $ 72.27万
  • 项目类别:
    Studentship Programs
Effect of age of onset of contraception use on brain functioning.
避孕开始年龄对大脑功能的影响。
  • 批准号:
    511267-2017
  • 财政年份:
    2017
  • 资助金额:
    $ 72.27万
  • 项目类别:
    University Undergraduate Student Research Awards
Non-random occurrence and early age of onset of diverse lymphoid cancers in families supports the existence of genetic risk factors for multiple lymphoid cancers.
家族中多种淋巴癌的非随机发生和发病年龄较早,支持多种淋巴癌存在遗传危险因素。
  • 批准号:
    347105
  • 财政年份:
    2016
  • 资助金额:
    $ 72.27万
  • 项目类别:
Polish-German Child Bilingualism: The Role of Age of Onset for Long-Term Achievement
波兰-德国儿童双语:发病年龄对长期成就的作用
  • 批准号:
    277135691
  • 财政年份:
    2015
  • 资助金额:
    $ 72.27万
  • 项目类别:
    Research Grants
Bioinformatics strategies to relate age of onset with gene-gene interaction
将发病年龄与基因间相互作用联系起来的生物信息学策略
  • 批准号:
    9097781
  • 财政年份:
    2015
  • 资助金额:
    $ 72.27万
  • 项目类别:
Early Age-of-Onset AD: Clinical Heterogeneity and Network Degeneration
早期 AD 发病年龄:临床异质性和网络退化
  • 批准号:
    9212684
  • 财政年份:
    2014
  • 资助金额:
    $ 72.27万
  • 项目类别:
Early Age-of-Onset AD: Clinical Heterogeneity and Network Degeneration
早期 AD 发病年龄:临床异质性和网络退化
  • 批准号:
    8696557
  • 财政年份:
    2014
  • 资助金额:
    $ 72.27万
  • 项目类别:
Effects of delaying age of onset of binge drinking on adolescent brain development: A proposal to add neuroimaing measures to the CO-Venture Trial.
延迟酗酒的发病年龄对青少年大脑发育的影响:在 CO-Venture 试验中添加神经影像测量的建议。
  • 批准号:
    267251
  • 财政年份:
    2012
  • 资助金额:
    $ 72.27万
  • 项目类别:
    Operating Grants
Stress Effects on Alcohol Consumption: Age of onset and genes in heavy drinkers
压力对饮酒的影响:酗酒者的发病年龄和基因
  • 批准号:
    8606722
  • 财政年份:
    2012
  • 资助金额:
    $ 72.27万
  • 项目类别:
Marijuana: Neurobiologic Correlates of Age of Onset
大麻:发病年龄的神经生物学相关性
  • 批准号:
    8644793
  • 财政年份:
    2012
  • 资助金额:
    $ 72.27万
  • 项目类别:
{{ showInfoDetail.title }}

作者:{{ showInfoDetail.author }}

知道了