International Patient Registry to Collect Data and Improve Care for Castleman Disease

What this Trial Is About

Researchers are collecting clinical, laboratory, and patient survey data from individuals with Castleman disease to enhance understanding, diagnosis, and treatment of this rare condition. Supported by the Castleman Disease Collaborative Network and funded by the FDA OOPD, this international registry aims to gather real-world data from 1000 patients worldwide to support future research efforts. Participants will enroll online and provide electronic medical records for data extraction by researchers at the University of Pennsylvania. Every three months, participants are asked to complete questionnaires about their symptoms, treatments, and experiences. The registry also tracks available tissue samples to build a virtual biorepository for research. Throughout the study, researchers will collect standardized demographic and longitudinal data, including common symptoms, laboratory abnormalities, treatments, survival, patient subtypes, clinical outcome measures, and biomarkers over a period of up to five years. All collected information is securely stored, and researchers interested in Castleman disease can request access to anonymized registry data to advance scientific knowledge.

International Registry for Patients With Castleman Disease