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Symposia

Obsessive Compulsive and Related Disorders

Characterizing Hoarding Disorder Across the Lifespan: Recent Research from Pediatrics to Geriatrics

1 - (SYM 26) The All of Us Research Program: A Unique Cohort of Individuals Diagnosed with Hoarding Disorder

Friday, November 21, 2025
5:04 PM - 5:18 PM CST
Location: Bolden 4, Level 2
Keywords: Hoarding, Early Intervention, Social Skills Training
Recommended Readings: Cath, D. C., Nizar, K., Boomsma, D., & Mathews, C. A. (2017). Age-specific prevalence of hoarding and obsessive compulsive disorder: a population-based study. The American Journal of Geriatric Psychiatry, 25(3), 245-255.,   Dozier, M. E., Porter, B., & Ayers, C. R. (2016). Age of onset and progression of hoarding symptoms in older adults with hoarding disorder. Aging and Mental Health, 20(7), 736-742. https://doi.org/10.1080/13607863.2015.1033684,   Nix, C. A., Dozier, M. E., Porter, B., & Ayers, C. R. (2024). Clinician Sentiments Related to Implementation of Evidence-Based Treatment for Hoarding in Older Adults. Journal of Psychopathology and Behavioral Assessment, 46, 683–694. https://doi.org/10.1007/s10862-024-10140-5,   Prosser, R. M., Salkovskis, P. M., & Dennis, J. P. (2024). Understanding stigma in hoarding disorder: A systematic review. Journal of Obsessive-Compulsive and Related Disorders, 100872.,   Stumpf, B. P., De Souza, L. C., Mourão, M. S., Rocha, F. L., Fontenelle, L. F., & Barbosa, I. G. (2023). Cognitive impairment in hoarding disorder: a systematic review. CNS spectrums, 28(3), 300-312.
Abstract Body

Hoarding disorder a highly stigmatized disorder characterized by increased acquisition, difficulty discarding, and high levels of clutter. While hoarding disorder was added to the DSM-5 in 2013 and prevalence rates are estimated to be between 2-3% of the population, few individuals are diagnosed with hoarding disorder. Possible reasons for this include low insight, low treatment-seeking, and the home-based nature of clutter.

The All of Us Research Program seeks to collect data from at least a million Americans. The research population includes adults who reside in the United States and self-refer to the study, with additional outreach conducted to populations understudied in biomedical research. Participants are asked to complete self-reported surveys and provide access to electronic health records (EHRs), among other measures. Of the 393,596 participants sharing EHRs, 175 individuals have been diagnosed with hoarding disorder (.04%) (SNOMED: 191736004). This presentation will describe this cohort and detail the availability of data on them.

Hoarding diagnoses occurred between 2013 and 2023 with most cases coming from outpatient appointments. Demographically, this cohort is largely women (68.0%), White (66.9%), and non-Hispanic (88.6%) which is more homogonous than the larger All of Us population. The average age of this cohort in 2020 was 61.9 (SD =12.3). Additional survey availability ranges from 20.6% to 48.6%. A large proportion of the cohort has genetic data (86.3%) and physical measurements (98.3%) available. Alternatively, less than 20 individuals shared Fitbit data. Common comorbidities include hypertension (77.7%), depressive disorders (68.6%), anxiety disorders (66.3%), and obsessive-compulsive disorder (45.1%).

This cohort demonstrates the underdiagnosis of hoarding disorder in the population. As such, there are likely selection factors for this diagnosis and thus inclusion in the cohort. However, this cohort can produce valuable insights into hoarding disorder. Additionally, this cohort will continue to grow as more participants are added into All of Us and as current participants share medical records and complete additional surveys.