The FORWARD Psoriasis Registry: Patient-Reported Outcomes in a Novel Psoriasis Registry and Comparison of Traditional,Dermatologist-Led Enrollment With Web-Based Patient Enrollment

Abstract

Background

Real-world evidence describing the natural history of all manifestations and severities of psoriasis is needed, as existing studies often recruit from a restricted patient population, and treatment failure and dissatisfaction is common. The FORWARD Psoriasis Registry collects patient-reported data directly online from participants independent of clinician involvement.

Objective

To test the feasibility of this new registry design and compare baseline characteristics, patient-reported disease outcomes, and treatment utilization between participants enrolling through their clinician (primary enrollment group) and participants self-enrolling online (secondary).

Methods

We summarized cross-sectional enrollment data from adults with clinician-diagnosed psoriasis who enrolled in the registry from September 2023 through June 2024 and compared baseline characteristics between enrollment groups.

Results

The registry enrolled 1560 adults with clinician-diagnosed psoriasis from 42 states and territories in the United States. In the primary enrollment group, 68% were female, mean age was 51 years, 34% of participants had moderate or severe psoriasis based on PREPI, and 27% reported clinician-diagnosed psoriatic arthritis. Forty six percent actively used systemic therapies while 65% used topical therapies for psoriasis, and 20% were dissatisfied or very dissatisfied with their treatment. Comparatively, the secondary enrollment group reported statistically significantly worse psoriasis burden for nearly all disease outcomes.

Conclusion

The FORWARD Psoriasis Registry rapidly enrolled a large, national cohort of participants with psoriasis, demonstrating feasibility of participant-driven data collection. We found important differences between participants enrolling through their clinician and self-enrolled participants, highlighting the need to collect real-world evidence to understand psoriasis regardless of access to clinical care.