The tracker catalogs changes across more than 60 federal agencies covering topics that include the environment, labor, law enforcement, education, and public health. Datasets related to health appear most frequently among the terminated or altered collections identified so far, accounting for about 40 percent of the total.
Examples cited by the group include a database of federal law enforcement officer misconduct records; a survey measuring physical, sexual, and emotional violence against children and youth; and real-time pollution readings collected by air quality monitors at U.S. embassies around the world.
What Changed and Why It Is Difficult to Count
Federal agencies are not required to notify the public when data collections are terminated. Some datasets have stopped updating because of staffing reductions. Others have been removed from agency websites with limited notice. Regular scheduled updates can also make it hard to distinguish a permanent deletion from a routine refresh.
“The question we’re trying to answer is: are certain datasets being taken away that have an impact on the American people?” said Christopher Dick, a co-founder of dataindex.us and former chief of the population evaluation, analysis and projections branch at the Census Bureau. The group launched the tracker in part because it was difficult to determine how many federal datasets had actually been deleted.
Researchers identified changes through a mix of methods: reviewing how datasets were used, crowdsourcing from news reports, government employees, and data users, monitoring social media, and tracking notices about proposed regulations from the Office of Information and Regulatory Affairs.
Denice Ross, former U.S. chief data scientist under the Biden administration and a co-founder of dataindex.us, said the tracker is not a complete list and is likely still an undercount. “We want people who depend on different datasets, some of which might be sort of obscure, to let us know what corners to look in because we don’t have full visibility,” Ross said.
Health Data and Changes to Gender Identity Questions
One of the principal changes identified in health datasets is that several collections no longer gather information on queer and trans people. The tracker links those revisions to President Donald Trump’s executive order titled “Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government.”
Multiple Centers for Disease Control and Prevention surveys have removed questions about respondents’ gender identity, according to the group. Those include the National HIV Surveillance System, the National Violent Death Reporting System, the CDC Diabetes Prevention Recognition Program, the National Intimate Partner and Sexual Violence Survey, and specific surveys evaluating PrEP uptake among gay men and in communities of color.
At least four health datasets are no longer being updated at all, the tracker reports. Among them is the Substance Abuse and Mental Health Services Administration’s Drug Abuse Warning Network, a system that doctors and public health researchers used to track drug-related emergency room visits in near real time and to identify emerging overdose trends.
“These data are critical for identifying emerging epidemics and what parts of the population are most vulnerable to different types of health conditions,” said Thomas Babor, a professor emeritus at the University of Connecticut who specializes in public health and addiction.
“We need to know what direction the trend is going, whether it’s the beginning of an end; we need to learn from prior episodes of epidemics and how they were responded to and what impact the responses had,” Babor said. “Taking down, even temporarily, some of the most important surveys that we have, especially for comparative purposes, is like we’re erasing our institutional memory for public health.”
Other Collections Cited
The tracker also lists deletions or discontinuations outside health. Those include the U.S. Department of Agriculture’s twice-annual survey of farm employers, which counted farm workers and their wages and informed minimum pay rates for H-2A visa workers, and a National Center for Education Statistics survey of the pay and working conditions of teachers and principals at public and private schools.
Ross described the broader implications in these terms: “We’re at a very vulnerable point as a nation. We’re facing a future where we are not going to have the information that we need to make decisions that will save lives and benefit American communities.”
Limitations of the Tracker
dataindex.us presents its inventory as a starting point rather than a definitive census. Because agencies do not have a uniform public notification process for ending or revising collections, and because some changes may reflect budget or staffing constraints rather than a formal decision to retire a dataset, the figures of 28 deletions and 338 modifications should be read as a documented minimum based on the group’s methods, not a complete official tally.
Users of federal data who believe a specific collection has been removed or substantially altered can report it to the project. The Guardian has also invited tips about deleted or changed government materials as part of a related reporting series.
The policy debate over which demographic categories federal surveys should include, how frequently collections should be updated, and how agencies prioritize limited statistical resources remains unsettled. What the tracker documents is a measurable change in the public availability and content of a large number of federal datasets over a relatively short period, with health-related collections representing the largest share of those identified so far.