Characterization of SLE Patient Population from the FORWARD Lupus Registry (FLR) in the US

Speaker(s)

Park M1, Pedro S2, Lannon J3, Calado F4, Michaud K5, Katz P6
1Alira Health, Basel, Switzerland, 2FORWARD The National Databank for Rheumatic Diseases, Wichita, KS, USA, 3Alira Health, Miami, FL, USA, 4Alira Health, Lisbon, Lisbon, Portugal, 5University of Nebraska Medical Center, Omaha, NE, USA, 6University of California San Francisco, San Francisco, CA, USA

Presentation Documents

OBJECTIVES: The FORWARD Lupus Registry (FLR) is an online longitudinal patient-reported registry in the US, collected through FORWARD, The National Databank for Rheumatic Diseases. Encompassing a broad spectrum of data such as socio-demographics, disease characteristics, Patient-Reported Outcomes (PROs), comorbidities, treatments, and lifestyle patterns, the FLR provides an opportunity to gain patient experience insights. This study describes demographic and clinical characteristics of FLR participants.

METHODS: FLR has an open enrollment, with data collected every six months from patients via biannual surveys. A retrospective analysis was conducted on physician-confirmed SLE participants who completed at least one biannual survey from 1999 through 2023. Participants with missing data for age or sex were excluded (n=131). Descriptive statistics for baseline observations and prevalence rates for comorbidities and hospitalizations across the study period were analyzed.

RESULTS: The FLR cohort included 1,902 patients, 93.6% females. The baseline mean age was 50.1 (SD 13.6) years. 73%, 15%, and 12% were White, Black, and other race/ethnicity, respectively. Mean duration of disease at baseline was 14.4 (SD 11) years. FLR participants completed up to 47 biannual surveys (mean 9 (SD 9.3), median 5 [IQR 2-13]). The most prevalent comorbidities across the study period were hypertension (55.9%), gastrointestinal issues (50.3%), depression (48.6%), pulmonary problems (35.9%), and cardiac issues (32.2%). Patients were treated at least once with hydroxychloroquine (69.2%), glucocorticoids (55.4%), nonsteroidal anti-inflammatory drugs (50.7%), disease-modifying antirheumatic drug (81.7%), immunosuppressants (46.2%), and belimumab (4.2%). During the study period, 59% of patients had at least one ER visit and 48% had at least one hospitalization for any reason. The mean number of hospitalizations was 1.7 (SD 3.47), with a mean hospital length of 7.8 days.

CONCLUSIONS: With data collected over 25 years, the FLR provides a rich source of data that can provide insights into the health and experiences of people with SLE over an extended period.

Code

RWD61

Topic

Epidemiology & Public Health, Study Approaches

Topic Subcategory

Public Health, Registries

Disease

Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)