Archiving and Documenting Data from the NICHD MFMU Network and MOMS Studies

Eunice Kennedy Shriver国家儿童健康和人类发展研究所（NICHD） 产妇胎儿医学单位网络成立于1986年，进行主要的随机试验， 母胎医学的观察性研究。两项观察性研究-剖宫产登记研究 和围产期卓越评估（APEX）研究-一起提供详细的产科和 192，000名妇女的分娩信息，特别关注孕产妇发病率。的目的 剖腹产登记是为了确定在先前患有子宫内膜癌的妇女中试产的安全性和成功率。 剖腹产APEX的目的是评估护理质量的措施。在这两项研究中， 收集了关于产妇发病率和病人特征的详细资料。通过协调 这两个数据集可以为高危产科研究者提供丰富的资源。 NICHD还支持了脊髓脊膜膨出管理研究（MOMS），这是一项突破性的研究。 婴儿出生前与出生后手术修复脊柱裂缺损的试验 外科修复此外，MOMS 2，一项对6至10岁儿童的随访研究， 完成了该试验和后续研究可作为以下领域其他试验的模式： 母亲和胎儿在出生前都接受手术的母胎手术。我们提出 创建一个链接的数据集，在保护隐私的同时，将为研究人员提供一个独特的 母胎治疗领域的纵向数据资源。 作为这两个计划（MFMU和MOMS）的数据协调中心，我们将使 精心策划的数据与适当的元数据提供给NICHD数据和标本中心， 对PAR-20-064“儿童健康和人类发展数据汇编和记录”的回应 塞茨

The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Maternal Fetal Medicine Units Network was set up in 1986 to conduct major randomized trials and observational studies in maternal-fetal medicine. Two observational studies – the Cesarean Registry and the Assessment of Perinatal Excellence (APEX) study – together provide detailed obstetric and delivery information on 192,000 women, with a particular focus on maternal morbidity. The purpose of the Cesarean Registry was to determine the safety and success of trial of labor in women with a prior cesarean delivery. The purpose of APEX was to evaluate measures of quality of care. In both studies, detailed information on maternal morbidity and patient characteristics were collected. By harmonizing these two datasets we can provide a rich resource for researchers in high risk obstetrics. The NICHD also supported the Management of Myelomeningocele Study (MOMS), a ground-breaking trial of surgical repair of the spina bifida defect before the baby is born versus the usual postnatal surgical repair. In addition, MOMS2, a follow-up study of the children at 6 to 10 years old has recently been completed. The trial and the follow-up study serve as a model for other trials in the area of maternal-fetal surgery where both the mother and fetus undergo a procedure before birth. We propose to create a linked dataset, which while preserving privacy, will provide researchers with a unique resource of longitudinal data in the field of maternal-fetal therapy. As the data coordinating center for both of these initiatives (MFMU and MOMS) we will make the carefully curated data with appropriate metadata available to the NICHD Data and Specimens Hub in response to PAR-20-064 ‘Archiving and Documenting Child Health and Human Development Data Sets’.