Eating Disorders Public Health Surveillance

The Centers for Disease Control and Prevention (CDC) keeps a close eye on the health of Americans by collecting data from individuals, hospitals, and healthcare providers.  They call this “health surveillance.” The CDC’s health surveillance in communities across the country is often the only way we know when there is an outbreak of an infection, such as COVID-19, or rising rates of an illness, such as skin cancer, affecting one community or sometimes many communities. Collecting this information helps to keep track of trends that might either show prevention programs are working or maybe instead show that things are getting worse and the public health and healthcare communities need to respond by stepping up efforts to address the causes of illness and ensure there is treatment available to the communities in need.

This system can work really well when the right questions are asked on surveys, when the right data are counted. But the flip side of that is that if questions are not asked about a particular health issue, we really don’t know what’s happening and we might not even know a problem exists.  Simply put, if you’re not counted, you don’t count. This is why STRIPED is leading a collaboration of national organizations, including the Academy for Eating Disorders, Eating Disorders Coalition, and the National Eating Disorders Association, to urge the CDC to include survey questions to track eating disorders across the country and to spot the early signs and symptoms. Once eating disorders are on the CDC’s radar and included in the agency’s national health surveillance surveys, we will be much more prepared to develop an appropriate and effective public health response.

Most recently, STRIPED has been focusing its efforts on the CDC’s Youth Risk Behavior Survey (YRBS), a representative survey of high school students in the U.S. For many years, the YRBS was one of the few sources of national data on the prevalence of disordered eating behaviors among youth. However, in 2015, items assessing disordered eating were removed from the YRBS questionnaire, leaving public health professionals and researchers without the necessary information to monitor trends and patterns in these behaviors. Getting these items back on to the questionnaire is of critical public health importance. Read a proposal that we submitted to the CDC in December 2021 to request the addition of disordered eating items onto the standard and/or national YRBS questionnaire.

In 2017, the president signed the appropriations bill funding the US Dept. of Health and Human Services. The reason this is cause for celebration is that this legislation is accompanied by a congressional conference report with language urging the CDC to include eating disorders related questions on the Youth Risk Behavior Surveillance System Survey.

On Oct. 5, 2017, more than 150 advocates from across the United States congregated in Washington, D.C., and attended almost 120 meetings with members of Congress and their staff to educate them about why the CDC should start tracking eating disorders in their surveillance surveys of the nation’s health. In response to this successful advocacy effort, both the U.S. Senate and House of Representatives have released letters to CDC Director Brenda Fitzgerald urging her to begin discussions on the role the agency could play in launching national surveillance of eating disorders. These letters include an impressive 17 signatories from the Senate and 48 signatories from the House of Representatives! We are so grateful to Senators Warren, Baldwin, Capito, and Klobuchar and Representatives Deutch and Mullin for their sponsorship of these important letters. See the press release from Eating Disorders Coalition, STRIPED, and the Academy of Eating Disorders.

In summer 2024, the CDC announced that an item assessing binge eating will be included in the 2025 National Youth Risk Behavior Survey (YRBS) Questionnaire, marking the first time in over a decade that such data will be collected. This is a huge win for improving the surveillance of eating disorders in the U.S., and it was the result of years of advocating by STRIPED and its Eating Disorders Public Health Surveillance Working Group, the Eating Disorders Coalition (EDC), the Academy for Eating Disorders (AED), and many other incredible organizations! Massive thanks to these groups for pushing for the need for more and better eating disorder data.

December 9, 2021

STRIPED Director S. Bryn Austin and Postdoctoral Fellow Ariel Beccia were quoted in a STAT News article, “A decade without data: Eating disorder researchers say a gap in CDC survey has left them flying blind,” highlighting STRIPED’s efforts to re-include items assessing disordered eating behavior within the CDC’s YRBS.

December 1, 2021

In December 2021, STRIPED, in partnership with the Academy for Eating Disorders (AED), the Eating Disorder Coalition, other national and local eating disorder organizations, and state Youth Risk Behavior Survey (YRBS) coordinators submitted a proposal to the CDC for the re-inclusion of items assessing disordered eating behaviors within the 2023 standard national YRBS. Check out the proposal here!

September 27, 2018
The president signed the appropriations bill funding the US Dept. of Health and Human Services! The reason this is cause for celebration is that this legislation is accompanied by a congressional conference report with language urging the CDC to include eating disorders related questions on the Youth Risk Behavior Surveillance System Survey. See the press release here!

February 20, 2018
Drs. Steven F. Crawford and Harry A. Brandt, co-directors of The Center for Eating Disorders at Sheppard Pratt, wrote a commentary on the STRIPED-led collaborative effort to urge the CDC to collect data on on eating disorders with their national surveys. The article, “30 million people will experience eating disorders- the CDC needs to help,” was published in the Capitol Hill paper The Hill.

December 28, 2017
STRIPED’s efforts to urge the CDC to monitor eating disorders in the U.S. were outlined in the Baltimore Sun op-ed, “Data Collection Critical to Understanding and Treating Eating Disorders,”  written by Dr. Crawford of the Sheppard Pratt Center for Eating Disorders.

November 29, 2017
Check out Harvard Chan School of Public Health’s “The Big Three” interview and podcast highlighting our initiative to urge the CDC to monitor eating disorders in the U.S.

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