The Pregnancy Risk Assessment Monitoring System (PRAMS) is a federal data collection system, run out of CDC, “designed to identify groups of women and infants at high risk for health problems, to monitor changes in health status, and to measure progress towards goals in improving the health of mothers and infants,” in the words of the program’s website. It has run continuously since 1988 and covers everything from the particulars of newborn health and morbidity to issues like post-partum depression in mothers. I can report that the Trump CDC has shuttered the program as part of its general clampdown on medical research and public health information.
A couple researchers have posted on social media about what I’m now reporting. But to the best of my knowledge we’re the first news organization to confirm the news independently. I was able to confirm what CDC personnel who work on the PRAMS program told two separate sources outside the government, the first at a state level public health and data collection program and a second at an academic research institution which makes extensive use of PRAMS data.
According to these sources, the entire program has been shuttered. This apparently happened soon after President Trump’s inauguration, with no additional data being accepted after January 31st. But there was no official announcement, even to other research institutions who collaborate on the project. So word only seeped out slowly after people realized that what seemed like it might be a temporary stoppage in the data wasn’t simply a technical problem.
As it has been conveyed to these sources, all data collection for 2024 is over and no data received after January 31st, 2025 is being accepted. The entire 2025 PRAMS program is on indefinite hold. The most curious and ominous part of what CDC personnel are informally telling partner researchers and institutions is that the entire program is now under a new IRB review.
An “IRB” is an Institutional Review Board. And in this context, what that generally means is a review to determine whether a particular medical procedure, kind of research or data collection is ethical and/or appropriate or in the best interests of the individual whose data is being collected. (For those who are experts in this area I know there’s a lot an IRB can cover, but I am trying to provide a broad overview of what an IRB does and the kinds of questions it takes under its purview.)
Such a review is entirely standard in research and public health data collection. But it’s not clear what sort of review this refers to in this case or what the need for such a review would be for a program that has been continuously active for almost 40 years. The thought that first occurs to me is that this may be tied to the new administration’s opposition to abortion, both surgical and medicinal, and its general suspicion about reproductive health medicine in general. A CDC document on the PRAMS methodology also notes that “women from some groups are sampled at a higher rate to ensure adequate data are available.” So perhaps the whole protocol has run afoul of DEI-related opposition to the study of medical problems impacting particular ethnic or racial minority groups. But to be clear, both those possible reasons are my speculation. All I’m able to confirm is that one of my two sources reports that the research protocol is currently under a new IRB review.
If you have more information about the shuttering of the PRAMS program (or any other developments at HHS, NIH, NCI, et al.) and you would like to reach me confidentially you can reach me on Signal at joshtpm dot 99 or via encrypted mail at joshtpm (at) protonmail dot com.
