Table 2.

Publically Available Databases for Women’s and Perinatal Health Services Research, Quality, and Benchmarking

Database Name	Content	Dates of data collection	Approval(s) needed to access data	Cost
Agency for Healthcare Research & Quality (AHRQ)	Hospital data (Healthcare Cost and Utilization Project, HCUP), individual healthcare expenditure data (Medical Expenditure Panel Survey), and state healthcare expense data (State Snapshots), as well as others.	Example: HCUP data on national inpatient services available for 1988–2011. Other datasets from AHRQ are available; dates vary by dataset.	Online and signed data use agreements and training course are required.	$50–150/dataset for students $350–500 for researchers
American Association of Birth Centers (AABC) Perinatal Data Registry	The registry, originally designed for birth centers, now includes data from diverse perinatal settings and care providers. Women are enrolled at the first prenatal visit, and data entered at key time points in perinatal care, resulting in prospective enrollment ahead of perinatal outcomes.	Data from 2007- forward is available.	Scientific data request form must be submitted along with IRB approval. All abstracts, manuscripts, and publications must be approved by the AABC Research Committee and Board of Directors prior to submission.	Dependent on the amount of data and AABC membership status
Centers for Medicare & Medicaid Services	Enrollment and utilization data for Medicaid and Medicare participants from across the US available. Participant-level and facility-level data available.	Small number of states have data from 1980–present for Medicaid. Participation of all states mandated from 1999–present for Medicaid.	Contact the Research Data Assistance Center (ResDAC), the organization that assists researchers to discuss study plans and type of files needed. A fee and a data use agreement are required.	Up to $2000
Center for Disease Control and Prevention
Pregnancy Risk Assessment Monitoring System	State-specific data on maternal attitudes and experiences before, during, and shortly after pregnancy obtained through English and Spanish surveys sent to a sample of women in each state.	Yearly data since 1987 Questionnaire versions: Phase 1 (1988–1989), Phase 2 (1990–1995), Phase 3 (1996–1999), Phase 4 (2000–2003), Phase 5 (2004–2008), Phase 6 (2009–2011), Phase 7 (2012–2015), Phase 8 (2016–present). Codebook defines variables.	Data sharing agreement is required. Researcher contact information, project abstract and data requested (states and years) should be submitted. Requests are approved by committee that meets monthly.	No Cost
US Vital Statistics Data	Birth, fetal death, and infant death data. Birth data cover 99% of all domestic births.	Annually; data type affects years available.	Check with internal IRB; generally non-human subjects research and exempt from IRB oversight; No permissions needed from CDC NCHS for data download and use.	Free
Eunice Kennedy Shriver National Institute of Child Health and Human Development Data and Specimen Hub
Community Child Health Network	De-identified maternal and child health data from a multi-site, prospective cohort study of postpartum women and their spouses (n = 4,837).	2004–2009	Data use agreement signed by requestor and authorized representative of requestor’s organization as well as a brief description of proposed secondary analysis should be submitted. The proposal is then approved by NICHD DASH data committee and/or study-specific approval entity.	No cost
Consortium on Safe Labor	Detailed, de-identified information from medical records of 228,562 women birthing in one of 19 US academic medical centers	2002–2008	Data use agreement signed by requestor and authorized representative of requestor’s organization as well as a brief description of proposed secondary analysis should be submitted. The proposal is then approved by NICHD DASH data committee and/or study-specific approval entity.	No cost
Maternal-Fetal Medicine Unit Network: Screening for Risk Factors for Spontaneous Preterm Delivery	De-identified demographic, behavioral, psychological, anthropometric, biologic, ultrasound and physical examination data from a multi-site, observational study of 3,073 women with singleton pregnancies.	1992–1995	Data use agreement signed by requestor and authorized representative of requestor’s organization as well as a brief description of proposed secondary analysis should be submitted. The proposal is then approved by NICHD DASH data committee and/or study-specific approval entity.	No cost
Listening to Mothers	National survey of women in the US who gave birth to a singleton baby. Includes information on pregnancy planning, care providers, labor support, labor onset, perinatal medical interventions, breastfeeding, feelings about care during labor and birth, treatment by caregivers, description of labor and birth experiences, general postpartum health, and emotional health after birth.	Listening to Mothers (2002; N = 1,583) Listening to Mothers II (2006; N = 1,573), Listening to Mothers III (2012; N = 2,400) Listening to Mothers II: New Mothers Speak Out (2006; n = 903), Listening to Mothers III: New Mothers Speak Out (2013; n = 1,072)	Check with internal IRB; generally non-human subjects research and exempt from IRB oversight. No permissions for data download from the Odum Institute’s Dataverse.	No cost
Midwives Alliance of North America Statistics Project (MANA Stats)	Datasets include 3 iterations: 2.0, 3.0, and the current 4.0, each with different variables. Midwives enroll patients early in prenatal care and enter data as perinatal events unfold; thus, data are prospectively collected. Once entered, records cannot be deleted. Most data are from planned homebirth or birth center care; ~12% of study participants have intrapartum hospital transfer and data include outcomes after transfer.	2.0 (2004–2009; N=24,000), 3.0 (2009–2011; N=15,000), 4.0 (2011–current; N=61,000) with approximately 1100 added each month	First, propose research question to MANA Research Review Committee. If approved, complete MANA application includes: description of project and research questions, methods/procedures, risks/benefits assessment, dissemination plan, timeline, funding summary, references, list of variables requested, CVs and documentation of human research ethics training for all investigators, and IRB approval.	Students- $100 Faculty at large research institutions- $1000 Faculty at smaller research institutions- $250
Strong Start for Mothers and Newborns Initiative	Participant and program-level data on Strong Start initiative to improve Medicaid and CHIP maternal and infant outcomes through enhanced prenatal care. Participant-level data includes maternal demographics, characteristics and outcomes of pregnancy, costs, and maternal satisfaction.	2013–2018 (anticipated)	Currently, only aggregate data are available for first 2 years of study. Full study data anticipated in 2018.	No cost

Abbreviations: AABC, American Association of Birth Centers; AHRQ, Agency for Healthcare research & Quality; CHIP, Children’s Health Insurance Program; DASH, Data and Specimen Hub; HCUP, Healthcare Cost and Utilization Project; MANA, Midwives Alliance of North America; NICHD, Eunice Kennedy Shriver National Institute of Child Health and Human Development; ResDac, Research Data Assistance Center