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

归档和记录来自 NICHD MFMU 网络和 MOMS 研究的数据

• 批准号: 10369614
• 负责人: Cora Ann Buckley MacPherson
• 金额: $ 6.3万
• 依托单位: GEORGE WASHINGTON UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-03-11 至 2023-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10369614
• 关键词: 10 year old; Archives; Area; Biometry; Birth; Cesarean section; Characteristics; Child; Child Health; Cohort Studies; Communities; Computer software; Consent; Data; Data Analyses; Data Coordinating Center; Data Set; Defect; Discipline of obstetrics; Documentation; Evidence Based Medicine; Fetus; Follow-Up Studies; Funding; Funding Opportunities; Hospitals; Human Development; Informed Consent; Link; Maternal Mortality; Maternal-Fetal Medicine Units Network; Maternal-fetal medicine; Measures; Meningomyelocele; Metadata; Mission; Modeling; Mothers; Names; National Institute of Child Health and Human Development; Observational Study; Obstetric Delivery; Operative Surgical Procedures; Patients; Perinatal; Play; Procedures; Quality of Care; Radiology Specialty; Randomized; Registries; Research; Research Personnel; Resources; Role; Safety; Specimen; Spinal Dysraphism; Trial of Labor; United States; Universities; Vaginal Birth after Cesarean; Washington; Woman; data access; data de-identification; data harmonization; data repository; fetus surgery; follow-up; high risk; in utero; longitudinal dataset; maternal morbidity; obstetric care; postnatal; prenatal therapy; privacy preservation; randomized trial; repaired; response; secondary analysis; success; user-friendly; waiver

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’.

尤尼斯·肯尼迪·施莱佛国家儿童健康和人类发展研究所