Song William B, Michaud Kaleb, Lonowski Sarah L, Kaufmann Mark, Pearson Ryan, Del Rosso James Q, Schumacher Rebecca, Ogdie Alexis R, Gelfand Joel M
Department of Dermatology, University of Pennsylvania, Philadelphia, PA, USA.
Department of Internal Medicine, Division of Rheumatology and Immunology, University of Nebraska Medical Center, Omaha, NE, USA.
J Psoriasis Psoriatic Arthritis. 2024 Nov 20:24755303241303089. doi: 10.1177/24755303241303089.
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.
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).
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.
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.
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.
由于现有研究通常从有限的患者群体中招募，且治疗失败和患者不满情况常见，因此需要关于银屑病所有表现形式和严重程度自然史的真实世界证据。FORWARD银屑病注册研究直接从参与者在线收集患者报告的数据，无需临床医生参与。
测试这种新注册研究设计的可行性，并比较通过临床医生招募的参与者（主要注册组）和在线自行注册的参与者（次要注册组）之间的基线特征、患者报告的疾病结局和治疗利用情况。
我们总结了2023年9月至2024年6月期间注册参加该研究的临床诊断为银屑病的成年患者的横断面注册数据，并比较了各注册组之间的基线特征。
该注册研究纳入了来自美国42个州和地区的1560名临床诊断为银屑病的成年人。在主要注册组中，68%为女性，平均年龄为51岁，根据PREPI，34%的参与者患有中度或重度银屑病，27%报告有临床诊断的银屑病关节炎。46%的患者积极使用全身治疗，65%的患者使用局部治疗银屑病，20%的患者对其治疗不满意或非常不满意。相比之下，次要注册组在几乎所有疾病结局方面报告的银屑病负担在统计学上显著更差。
FORWARD银屑病注册研究迅速纳入了一个大型的全国性银屑病患者队列，证明了参与者驱动的数据收集的可行性。我们发现通过临床医生招募的参与者和自行注册的参与者之间存在重要差异，强调了无论是否获得临床护理，都需要收集真实世界证据以了解银屑病。
