Background/Purpose: Ensuring that data registries include a representative sample is crucial for obtaining findings that can be generalized to the larger population. This comparative observational study sought to determine whether participants with psoriasis and psoriatic arthritis, enrolled in the FORWARD Psoriasis Registry, reflect the broader invited population at a single institution.

Methods: The FORWARD Psoriasis Registry is a multi-institutional, prospective U.S. study collecting patient-reported outcomes via online questionnaires.1 Patients with “psoriasis” documented in their medical record were invited to the registry via email. Enrollment status was tracked, and medical records were reviewed for demographics, comorbidities, dermatology visits, and current and past psoriasis therapies. Patients without a confirmed psoriasis diagnosis were excluded. Chi-squared, Fisher’s Exact, Wilcoxon rank sum, and equal variance t-tests were used to compare enrolled and non-enrolled groups.

Results: Of 917 patients invited, 113 enrolled (12%) and 804 (88%) did not. Enrollees were younger than non-enrollees (mean age 48.8 vs. 53.5; p=0.004), and insurance type varied significantly between groups (p=0.013). Enrollees had a higher proportion of private insurance while non-enrollees were more likely to have Medicare. Enrollees and non-enrollees did not differ across other demographic variables. Rates of obesity, hypertension, hyperlipidemia, thromboembolic events, and diabetes were not significantly different between groups. However, psoriatic arthritis was more common among enrollees (26.5% vs. 16.9%; p=0.013) (Table 1). Plaque psoriasis was the most common psoriasis phenotype among both enrollees and non-enrollees, and the proportion of those with plaque psoriasis did not vary between groups (p=0.455). The use of topical and biologic therapy did not differ between groups, though there was a significantly greater proportion of enrollees who utilized non-biologic systemic therapy in the past (34.5% vs. 24.9%; p=0.029) (Table 2).

Conclusion: Enrollees were broadly representative of those who were invited across demographic and cardiometabolic variables, though they were younger, had a higher prevalence of psoriatic arthritis, and were more likely to have tried non-biologic systemic therapy previously. This bias may reflect higher levels of participation among patients who are more comfortable with the registry’s online format and may indicate that patients with multisystem (i.e. skin and joint) disease are more motivated to participate in research registries. Overall, the study suggests findings from this institution’s FORWARD psoriasis registry can be generalized to the broader psoriasis population if these important differences are taken into account in future research.References:1. Song WB, Michaud K, Lonowski SL, et al. The forward psoriasis registry: patient-reported outcomes in a novel psoriasis registry. J Psoriasis Psoriatic Arthritis. 2024 Nov 20. doi:10.1177/24755303241303089.

Table 1. Demographic Characteristics and Comorbidities in Enrolled and Invited Psoriasis FORWARD Registry Groups

Table 2. Psoriasis Phenotype and Therapy Usage in Enrolled vs. Invited Psoriasis FORWARD Registry Groups

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/assessing-representation-in-a-nation-wide-psoriasis-registry-a-single-institution-comparison/