Abstract: SA-PO0789
Creation and Initial Demographics of the PERFORM Patient Registry: Novel Real-World Registry of Patients Treated for IgAN in the United States
Session Information
- Glomerular Research: Design, Registries, Surveys, and Epidemiology
November 08, 2025 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- 1402 Glomerular Diseases: Clinical, Outcomes, and Therapeutics
Authors
- White, Anna, Calliditas Therapeutics AB, New York, New York, United States
- Jones, Russell, Calliditas Therapeutics AB, New York, New York, United States
- Friedler, Haley S, Mission Health Labs Inc, San Francisco, California, United States
- Abner, Sophia C, Mission Health Labs Inc, San Francisco, California, United States
- Brooks, Warren P., Calliditas Therapeutics AB, New York, New York, United States
Background
As a rare, progressive disease, with an evolving treatment landscape, there is a need for better understanding of treatment patterns and experience for patients with Immunoglobulin A Nephropathy (IgAN). To address this need, the PERFORM Patient RegistryTM (PPR) has been created to assess longitudinal disease characteristics, healthcare utilization, clinical management, and treatment utilization patterns of patients treated with delayed release budesonide (Tarpeyo®) for IgAN in the United States (US).
Methods
PPR is a non-interventional, observational patient registry designed to collect longitudinal data on patients receiving Tarpeyo®. Consented US patients treated with Tarpeyo® for IgAN are recruited from across the US through a specialty pharmacy and from a prior registry. Using the PicnicHealth Research Platform, retrospective and prospective medical records for consented participants are retrieved in any format, across all providers and sites of care, digitized and compiled into a unified patient record that is provided back to the participant. Key data related to IgAN are then abstracted from participants’ medical records through AI-enhanced chart review to curate a de-identified dataset for research. Enrollment in PPR began in March 2025 and is ongoing, with plans to enroll approximately 600 participants, including pediatric, adolescent, adult, and post-transplant participants. The demographics for the current participants enrolled were described for this initial analysis of PPR.
Results
As of May 2025, 70 participants had enrolled in PPR. Participants had a mean (standard deviation [SD]) age of 43 (14) years at enrollment. Participants were 66% male, 7% Hispanic/Latino, 75% White, 3% Black/African American, 12% Asian, and 10% other races.
Conclusion
While enrollment is ongoing, the current PPR population contains a varied cohort of patients treated with Tarpeyo® for IgAN. This registry will allow for further understanding of IgAN management and outcomes for patients treated with Tarpeyo® for IgAN.
Funding
- Commercial Support – Calliditas Therapeutics