This agreement sets forth the terms of a shared agreement between the Centers for Disease Control and Prevention (CDC), National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP), Division of Reproductive Health (DRH) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Purpose. The purpose of this Agreement is to enable the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) to contribute to the funding of the development, fielding, and data preparation for a survey supplement to the Pregnancy Risk Assessment Monitoring System (PRAMS) to assess disabilities among postpartum women using the PRAMS survey for 12 months of data collection in 2019. Background The Pregnancy Risk Assessment Monitoring System (PRAMS) is a surveillance project of the Centers for Disease Control and state health departments conducted on a continuous basis by the Division of Reproductive Health (DRH) in the National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). The surveillance project collects state-specific, population-based data on maternal attitudes and experiences, before, during, and shortly after pregnancy. PRAMS surveillance currently covers about 83% of all U.S. births. The data can be used to identify groups of women and infants at high risk for health problems, to monitor changes in health status, arid to measure progress towards goals in improving the health of mothers and infants. DRH conducted 8 discrete cycles of the PRAMS since 198B; NICHD has not previously participated in the surveillance process. Data collected by PRAMS provide essential information relevant to NICHD's portfolio, particularly in areas related to pregnancy and perinatology, breastfeeding, physical abuse, infant health care, and contraception. However, what Is lacking in the surveillance effort currently is information on the influence of disability on pregnancy risks and infant and maternal outcomes. There are limited data to suggest that women with disabilities experience higher rates of or risks for adverse outcomes related to pregnancy, delivery, and post-partum care. However, individual studies do not constitute a nationally representative sample, nor do they encompass a broad view of disability or the range of outcomes that women may experience post-pregnancy. In addition, though there is anecdotal and some qualitative evidence that women with disability have different experiences of pre-, peri, and post-natal care, there are no surveillance data available to substantiate this. Since its inception, the PRAMS draw from a sample of women who have had a recent live birth drawn from the state's birth certificate file. Each of the 50 participating sites sample between 1,300 and 3,400 women per year. Women from some groups are sampled at a higher rate to ensure adequate data are available in smaller but higher risk populations, including oversampling of low birth weights. The surveillance methodology includes initial contact by mail, and if there is not response to repeated mailings, the women are contacted and interviewed by phone. All data collection procedures and instruments are standardized to allow comparisons between states. Scope During the period by this agreement, DRH shall exert its best efforts to collect data on disability in PRAMS. A supplement to the existing survey will be included for FY 19 and work will include preparation of the questions related to disability in FY 18, inclusion of the data in the FY 19 surveillance effort, and creation of the datasets for use by researchers in FY 20. The disability questions used will be those already approved by the Office of Management and Budget (OMB) in use in a wide variety of other surveys of women who are of reproductive age. 1, Program and test PRAMS survey instruments to include disability questions and work with state partners to garner support for the inclusion of the question supplement on the PRAMS surve 2; Complete the layout for mail and phone surveys, programming and testing of data collection software and CAT system and conducting data collection. 3. Obtain necessary clearances for conducting the survey, 4. Prepare question in formats for self-administration {mail (and web - if available)) and interviewer administration (phone) in English and Spanish. Develop variable names for new indicators and prepare documentation for software programming. Program questions into the PRAMS data collection software (mail data entry, web version - if available, CATI version) for English and Spanish questionnaires; conduct testing and verification. 5, Conduct the supplement survey for 12 months of data collection in collaboration with the states. This includes: making additional funding available to states through the 2016-2012 PRAMS Cooperative Agreement, creating survey supplement print files for mail, web-if available, and phone (in English & Spanish) for all states, provide states with guidance and documentation to address implementation issues such as IRB approval land interviewer training, and provide states with guidelines on operational aspects of data collection including data entry and data submission. 6, To the extent possible, keep NICHD/NCMRR's representative(s) informed on the progress of the survey through meetings with funding agency representatives and periodic progress reports, and other means. 7, Prepare clean data files containing the survey data for statistical weighting procedures. Conduct final weighting of data at the end of the calendar year for inclusion in full annual state PRAMS analytic datasets. Make weighted data available via PRAMS proposal process or public website. Produce summary tables of results by overall survey and state. Provide notice when data files are available on the PRAMS webpage. 8, Document data files, survey procedures, and key findings concerning trends, for communication to NICHD/NCMRR and the scientific and policy communities. 9, involve NICHD staff and representatives nominated by NICHD/NCMRR In decision-making concerning the design and schedule of the survey. Collaborate on the analysis of data and generation of publications and presentations related to the disability data. Collaborate with NICHD/NCMRR on dissemination of findings both
