Non-comprehensive list of open and accessible datasets for reproductive health research.
NICHD Data and Specimen Hub (DASH) is a centralized resource that allows researchers to share and access de-identified data from studies funded by NICHD. https://dash.nichd.nih.gov/
Specialty: Family Planning, Reproductive Health Description: Managed by the Centers for Disease Control and Prevention (CDC), the NSFG provides data on family life, marriage and divorce, pregnancy, infertility, use of contraception, and reproductive health in the U.S. Access: Free and publicly available. Data are de-identified and downloadable from the CDC website. Link: NSFG
Specialty: MFM, General Obstetrics Description: Jointly conducted by the CDC and state health departments, PRAMS collects state-specific, population-based data on maternal attitudes and experiences before, during, and shortly after pregnancy. Access: Researchers can request access to the data through the CDC’s PRAMS website. Some state-specific data are publicly available. Link: PRAMS
Specialty: Gynecologic Oncology Description: The SEER database provides comprehensive data on cancer incidence and survival in the United States, including gynecologic cancers such as ovarian, cervical, and uterine cancer. Access: Data are freely accessible with de-identified patient information for public use. Specific data requests can also be made for more granular data. Link: SEER Program
Specialty: REI, MFM, Gynecologic Oncology, General Obstetrics Description: The All of Us Research Program collects data from a diverse group of participants across the U.S. for precision medicine research. It includes genetic, clinical, environmental, and lifestyle data. Researchers can explore reproductive health, pregnancy outcomes, and cancer-related inquiries. Access: The data is available for research purposes through a tiered access model, with some datasets being open access. Link: All of Us
Specialty: MFM, General Obstetrics, Family Planning Description: The NVSS, managed by the National Center for Health Statistics (NCHS), provides data on vital events such as births, deaths, marriages, and divorces in the U.S. It includes extensive data on birth outcomes and maternal health. Access: Data files are freely available for download and use in research. Link: NVSS
Specialty: Global MFM, Family Planning, Reproductive Health Description: Hosted by the World Health Organization (WHO), the GHO provides data on global health topics, including maternal and child health, reproductive health, and fertility rates. Access: Publicly accessible, with downloadable datasets covering various reproductive health indicators worldwide. Link: GHO Data
Specialty: MFM, Gynecologic Oncology, General Obstetrics Description: Part of the Healthcare Cost and Utilization Project (HCUP), the NIS is the largest publicly available all-payer inpatient healthcare database in the U.S. It provides data on hospital stays, including those for pregnancy and gynecologic conditions. Access: Available for purchase through HCUP. Some limited datasets are publicly accessible. Link: HCUP-NIS
Specialty: Global Family Planning, Reproductive Health, MFM Description: The DHS program collects data on population health, including fertility, family planning, maternal and child health, and women’s reproductive health across multiple countries. Access: Data are free to access, but users must register to download datasets. Link: DHS Program
Specialty: MFM, General Obstetrics Description: This study focused on a cohort of nulliparous women and aimed to identify risk factors for adverse pregnancy outcomes, such as preterm birth and preeclampsia. The dataset includes biospecimens and extensive maternal and fetal data from early pregnancy through delivery. Access: Data requests can be submitted through the NICHD Data and Specimen Hub (DASH). Link: NuMom2b Data
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Maternal-Fetal Medicine Units (MFMU) Network
Specialty: MFM, General Obstetrics Description: The MFMU Network conducts clinical trials to improve pregnancy outcomes, focusing on conditions like preterm birth, preeclampsia, and fetal growth restriction. Several trials related to maternal-fetal health are available for data sharing. Access: Data from MFMU trials can be requested through the NICHD DASH, with approval required for access. Link: NICHD MFMU Network
Specialty: REI, MFM, Gynecologic Oncology, Family Planning Description: ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies conducted around the world. Some trials, especially those supported by NIH, offer data sharing options for researchers upon request. Access: Data sharing statements are included in many clinical trial records, allowing researchers to request access to de-identified data from specific studies. Link: ClinicalTrials.gov
Specialty: REI, MFM, Gynecologic Oncology, Family Planning Description: NIH RePORT includes access to clinical trials funded by the NIH, including those in the areas of reproductive health, obstetrics, and gynecology. Some of these trials offer data-sharing options for researchers, available through repositories like dbGaP or direct requests. Access: Data can be accessed by submitting formal requests based on individual trial guidelines. Link: NIH RePORT
Specialty: Gynecologic Oncology Description: GOG conducts clinical trials focusing on the treatment of gynecologic cancers. Data from completed studies are available upon request for researchers conducting secondary analyses. Access: Researchers can submit requests for access to trial data through the GOG Foundation, which requires protocol submission and approval. Link: GOG Foundation
Specialty: MFM, General Obstetrics Description: The ARRIVE trial examined outcomes of elective induction of labor at 39 weeks compared to expectant management in nulliparous women. The dataset includes detailed maternal, labor, and neonatal outcomes. Access: Data are available upon request through the NICHD DASH platform. Link: ARRIVE Trial Data
Specialty: REI, Family Planning Description: The RMN conducts clinical trials to evaluate interventions for infertility, reproductive endocrinology, and other reproductive health issues. Data from its trials are available to qualified researchers through the NIH DASH system. Access: Data requests can be submitted through NICHD DASH. Link: RMN Data
Specialty: MFM Description: The PEPET trial focused on the prevention and treatment of preeclampsia in pregnant women. The dataset includes patient outcomes, treatment protocols, and biological markers related to preeclampsia. Access: Available through NICHD DASH upon request. Link: PEPET Trial
Specialty: Gynecologic Oncology Description: OCAC pools data from multiple ovarian cancer studies to assess risk factors, treatments, and outcomes. Researchers can request access to de-identified patient-level data for secondary analysis. Access: Data can be requested through the OCAC website, subject to a formal data-sharing agreement. Link: OCAC Data
TO ADD
SMFM data sets Additional data sets interesting to me
Also the additional resources we talked about today: N3C NSQIP NHANES