Release: NIH to fund national data collection on new mothers with disabilities

Collaboration with CDC aimed at pregnancy initiatives and outcomes

Thursday, November 1, 2018
Pregnant woman in wheelchair
Pregnant woman in wheelchair

The National Institutes of Health will fund the collection of information from women with disabilities who give birth in the United States. The Pregnancy Risk Assessment Monitoring System (PRAMS) is a survey of the U.S. Centers for Disease Control and Prevention, administered by state health departments. PRAMS covers approximately 83 percent of U.S. births and includes information on mothers’ attitudes and experiences before, during and shortly after pregnancy. PRAMS data are widely used by researchers and state and local governments to evaluate the effectiveness of pregnancy initiatives and outcomes.

“It’s estimated that more than 1 million women of childbearing age in the United States have a disability,” said Alison Cernich, Ph.D., director of the National Center for Medical Rehabilitation Research (NCMRR), a component of NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). “But we really know very little about their pregnancy risks or even their basic experiences during or after pregnancy.”

NICHD research interests overlap with the focus of PRAMS, including pregnancy, breastfeeding, infant health care and contraception. Dr. Cernich explained that NCMRR’s efforts to include data on women with disabilities will contribute important information on the impact of disability on pregnancy and maternal and child health. It will provide $1.5 million to incorporate the disability survey as a supplement to the PRAMS questionnaire as part of data collection in 22 states. The survey will consist of 6 questions on functions, such as seeing, hearing, walking and self-care.

“The new data may help us better understand prenatal complications by disability type and severity, as well as the impact disability status may have on breastfeeding,” said NCMRR’s Dr. Cernich. “

The supplemental disability survey is expected to be administered in 2019. Data are expected to be available by 2020.

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