By Boris Litvin, MA
In December 2025, the IOCDF released its first white paper America’s OCD Care Crisis: National Findings on the Failure of Effective OCD Treatment to Reach Patients. Based on healthcare data from over 10 million Americans, we showed that only 0.69% from this group were either diagnosed with or were very likely to have OCD. Compared to the lifetime prevalence rate of 2.3% in the U.S. population (Ruscio et al., 2010), our findings show that OCD is underdiagnosed by health professionals in the US. Within this group of OCD patients, more than 80% of them do not receive the recommended, evidence-based psychotherapy for OCD — cognitive behavioral therapy (CBT) and exposure and response prevention (ERP).
Unfortunately, a similar trend is shown with pediatric OCD. Losing Childhood to America’s OCD Care Crisis: The State of Pediatric OCD Care in the United States, our recent follow-up paper that focuses solely on children and adolescents with OCD from the same dataset, showed that only 0.74% were diagnosed or detected by clinicians to have OCD; more than 64% of those diagnosed/detected were never referred to any kind of CBT, including ERP.
These results show a real crisis that affects not only people with OCD, but their families and communities. Millions of Americans continue to suffer needlessly from their OCD not being caught by healthcare professionals; even if it is, it is shocking that evidence-based treatment is not being recommended or offered by professionals, despite ample research and clinical evidence that supports its use.
Our recommendations from both papers include: (1) increasing routine screening for better and faster detection of OCD in healthcare settings; (2) improving clinical training; (3) promoting adherence to existing professional standards for OCD treatment; and (4) raising accurate awareness about OCD. We hope these white papers support our overall IOCDF mission: to ensure that everyone impacted by OCD and related disorders has immediate access to effective treatment, support, and opportunities for diagnosis. The fact that countless OCD patients, and their families and loved ones, suffer immensely every day from these lacks is tragic.
However, our findings and recommendations should also bring attention to, and benefit, another group: the researchers and their findings.
Why Is Research Important?
Simply put, we know that CBT and ERP, as well as selective serotonin reuptake inhibitor (SSRI) medications, are the evidence-based, first-line treatments for OCD — through research. We are discovering how to make these treatments better, and which other therapies can be promising to help people with OCD recover or even achieve remission — through research. Finally, we know what OCD is, and isn’t — through research. The work of dedicated teams of professors, students, and statisticians since the 1980s led us to understand how OCD operates, and to give patients and their families the skills and knowledge of how to fight it. We have come far since the days when OCD was considered a neurosis or a character flaw, and evidence-based treatments were not available. (At the same time, we still have much work to do.)
For a therapy to be considered scientifically effective, it must undergo trials that carefully examine it and compare it to a different therapy or a “control” group (the absence of a therapy). This work takes diligent planning, resources, and effort on the part of both researchers and participants. It is common for studies to be conducted over the course of several years, and for results to be reviewed for months before they are published in reputable scientific journals. Once they are published, they serve as records for clinicians and healthcare professionals on whether a therapy can help or harm someone with OCD. They also serve to inform other scientists of the work that has been done, and to inspire future necessary research.
To ensure that their studies can accurately represent the OCD experience and test out a theory or therapy with precision, most researchers recruit patients who have been, first and foremost, diagnosed with OCD in the past. The participants in a study need to be representative, after all.
This is where we run into a problem.
How Does OCD Research Work?
Here’s a quick rundown.
A study sample should reasonably represent a population. Scientists recruit participants who have been truly diagnosed with a condition to participate in their studies, so that results can reasonably show that a treatment works (or does not) for, or that there are (or are not) certain characteristics present, in people who have been diagnosed. There are some studies that may recruit people who believe that they may have a condition, and some that take samples from the public and extrapolate about a condition, but these are generally not used for determining serious qualities such as whether treatments work.
When it comes to OCD, to test how to make existing therapies like CBT and ERP become more accessible, participants have to be diagnosed with OCD to be eligible to receive this in the first place. This is the same when it comes to medication trials; medications cannot legally be prescribed and properly dosed without a diagnosis. And what about people with “treatment-resistant OCD”, for whom evidence-based therapies have not worked effectively? They can be eligible to receive stronger forms of therapy, such as neuromodulation (like transcranial magnetic stimulation (TMS) or deep brain stimulation (DBS). But first, they need to have demonstrated that psychotherapies and medications have not worked for them. And to access those in the first place, they need to have been diagnosed. Thankfully, there are many research studies that look at how to improve the lives of people with treatment-resistant OCD by reducing their symptoms. However, they definitely must recruit people who qualify as treatment-resistant, and who ultimately have begun their treatment journey by receiving a diagnosis.
OCD studies, especially those that look at treatment, have less participants compared to other mental health disorders which are diagnosed more by healthcare professionals. Unfortunately, it is far too common for OCD studies to run for longer than planned, simply because there aren’t enough participants diagnosed with OCD that can be recruited in time. Every study has its own unique criteria given what it is testing — a psychotherapy, a medication, or a mood tracker — but the common factor is that a participant has to be diagnosed with OCD in the first place.
An Unfortunate Loop
Our white papers showed that the vast number of people who have OCD in the US, whether they are children, adolescents, or adults, appear to not be diagnosed with it in healthcare settings. We propose (based on existing research) that it stems from a variety of reasons, such as lack of knowledge by and training for healthcare professionals, stigma about discussing OCD (whether because of the discomfort surrounding symptoms, cultural and gender differences in terms of seeking and receiving mental health care, or other reasons), lack of awareness by families and loved ones, and a host of other reasons.
However, if researchers need people who have been diagnosed with OCD to take part in their studies to move OCD science and treatments forward, we’re stuck in an unfortunate loop. This is holding back teams of treatment researchers from testing how to strengthen existing therapies, and knowing whether new and potentially more effective therapies work. It’s holding back geneticists from understanding how genes and environmental factors shape the development of OCD. It interferes with neuroscientific work into finding the brain regions that play a role in OCD, and how they can be best targeted to reduce symptoms. Finally, this loop interferes with the scientists whose aim is to better understand what OCD looks like in the first place: the stigma and misunderstanding preventing people from seeking a diagnosis and receiving treatment, the socioeconomic dimensions of the disorder, and other similar factors. The less people are properly diagnosed, the less they can opt to participate in studies, and what we know as evidence-based is slower to become apparent — or cannot be realized at all.
Existing evidence-based treatments work, but they unfortunately can’t work for everyone. Yet the pace of understanding what can work, whether through a new discovery or an update of something tried and true, is slower than it should be. If healthcare professionals can’t spot OCD — and can’t refer them to trusted treatments based on formal guidelines even if it is spotted — patients (1) can’t have the knowledge to consider next steps; (2) can’t access therapies that can improve their lives; and (3) can’t contribute to ongoing research.
What Can We Do?
First, I hope that reading this post brought light to the issue that researchers face from the OCD care crisis, and the consequences that stem from it. Gaining awareness and spreading the word to others is the first step, and we hope that the white papers can make a difference.
You can access our first white paper, America’s OCD Care Crisis, here, and our second, Losing Childhood to America’s OCD Care Crisis, here.
The IOCDF has created many resources for anyone who is interested, and we hope that they can inform, help, and empower all who come across them.
For researchers, I hope this inspires a conversation and increased advocacy. More accurate diagnoses and treatment recommendations can break the loop over time and lead to better opportunities for research.
If you’d like to promote your research study, please consider visiting our “Research Participants Sought” page on our website and submitting an advertisement.
Please stay tuned for our 2027 Research Grant Awards announcement, and consider applying for the 2027 Research Symposium and Poster Sessions at the 32nd Annual OCD Conference.
For non-researchers, you can find studies to participate in through our “Research Participants Sought” page. Researchers from labs in the US and Canada promote their studies there, and many don’t require an in-person visit.
For clinicians and healthcare professionals, please visit the IOCDF’s OCD Treatment Guide, where you can find up-to-date information about evidence-based therapies, medications, and interventions for OCD.
Finally, if you’d like to donate to our Research Grant Program, please click here. The IOCDF is proud to have funded outstanding research about OCD and related disorders across three decades, and it is only possible thanks to the generosity of donors like you.
Reference:
Ruscio, A. M., Stein, D. J., Chiu, W. T., & Kessler, R. C. (2010). The epidemiology of obsessive-compulsive disorder in the National Comorbidity Survey Replication. Molecular psychiatry, 15(1), 53–63. https://doi.org/10.1038/mp.2008.94
About the Author:
Boris Litvin, MA, is the IOCDF's Research Communications Specialist. He is a co-author of America’s OCD Care Crisis: National Findings on the Failure of Effective OCD Treatment to Reach Patients and Losing Childhood to America’s OCD Care Crisis: The State of Pediatric OCD Care in the United States.
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