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首页> 美国卫生研究院文献>Springer Open Choice >Congenital Hypothyroidism Long-Term Follow-up Project: Navigating the Rough Waters of a Multi-Center Multi-State Public Health Project
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Congenital Hypothyroidism Long-Term Follow-up Project: Navigating the Rough Waters of a Multi-Center Multi-State Public Health Project

机译：先天性甲状腺功能减退症长期随访项目：在多中心多州公共卫生项目中的艰难历程

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The Region 4 Midwest Genetics Collaborative, made up of seven regional states (Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, and Wisconsin), brought together pediatric endocrinologists, state laboratory experts, public health follow-up specialists, and parents of children with congenital hypothyroidism (CH) to identify the three-year follow-up management and education patterns of primary care clinicians and pediatric endocrinologists in the care of children diagnosed with CH by state newborn screening (NBS) programs. Among a number of challenges, each state had different NBS methods, data systems, public health laws, and institutional review board (IRB) requirements. Furthermore, the diagnosis of CH was complicated by the timing of the NBS sample, the gestational age, weight, and co-morbidities at delivery. There were 409 children with CH identified through NBS in 2007 in the seven state region. The clinician of record and the parents of these children were invited to participate in a voluntary survey. Approximately 64 % of clinician surveys were collected with responses to questions relating to treatment, monitoring practices, educational resources, genetic counseling, and services provided to children with confirmed CH and their families. Nearly one-quarter (24 %) of parents surveyed responded to questions relating to treatment, education, genetic counseling, resources, and services they received or would like to receive. De-identified data from six of the seven states were compiled for analysis, with one state being unable to obtain IRB approval within the study timeline. The data from this collaborative effort will improve state follow-up programs and aid in developing three-year follow-up guidelines for children diagnosed with CH. To aid in the facilitation of similar public health studies, this manuscript highlights the challenges faced, and focuses on the pathway to a successful multi-state public health endeavor.
机译：由七个地区州（伊利诺伊州，印第安纳州，肯塔基州，密歇根州，明尼苏达州，俄亥俄州和威斯康星州）组成的第4区中西部遗传学合作组织汇集了儿科内分泌学家，州实验室专家，公共卫生跟进专家以及儿童父母先天性甲状腺功能减退症（CH）来确定州立新生儿筛查（NBS）计划诊断患有CH的儿童的初级保健临床医生和儿科内分泌学家的三年随访管理和教育模式。在众多挑战中，每个州都有不同的NBS方法，数据系统，公共卫生法和机构审查委员会（IRB）要求。此外，由于NBS样本的时机，胎龄，体重和分娩时的合并症，CH的诊断变得复杂。在七个州，2007年通过NBS识别出409名CH儿童。记录的临床医生和这些孩子的父母被邀请参加自愿调查。收集了大约64％的临床医生调查问卷，以回答与治疗，监测方法，教育资源，遗传咨询以及为确诊患有CH的儿童及其家庭提供的服务有关的问题。接受调查的父母中有近四分之一（24％）回答了有关他们已经或希望获得的治疗，教育，遗传咨询，资源和服务的问题。对来自七个州中六个州的未识别数据进行了汇编以进行分析，其中一个州无法在研究时间表内获得IRB批准。这项合作努力得到的数据将改善州的随访计划，并帮助制定诊断为CH的儿童的三年随访指南。为了帮助进行类似的公共卫生研究，本手稿着重介绍了面临的挑战，并着重介绍了成功实现多州公共卫生事业的途径。

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