Global Patient Registry Launched for Castleman Disease

ACCELERATE (Accelerating Castleman Care with Electronic Longitudinal registry, E-Repository, And Treatment Effectiveness research), a patient-driven natural history registry for patients with Castleman disease, was recently launched through a research collaboration between the Castleman Disease Collaborative Network, the University of Pennsylvania, and Janssen Research & Development.

The registry is designed to collect data on longitudinal changes in the disease over time that may help inform and potentially advance clinical understanding, treatment, and patient outcomes of this rare disease.

“More research around the pathogenesis of Castleman disease is urgently needed,” said David Fajgenbaum, MD, MBA, MSc, an assistant professor of medicine at the Perelman School of Medicine at The University of Pennsylvania and principal investigator for ACCELERATE, who was diagnosed with Castleman disease in 2010. “As a physician−scientist and patient with this deadly disease, I believe a more collaborative, strategic, and focused approach is necessary to accelerating research.” Dr. Fajgenbaum spoke with ASH Clinical News about his diagnosis and efforts to establish the CDCN (Walking a Mile in Their Shoes: How Does It Feel to Be Both a Doctor and a Patient?).

The registry allows patients to contribute personal medical information to advance the knowledge of this rare disease. Unlike traditional registries, ACCELERATE does not require physicians to recruit or trial sites to enroll patients; patients in the United States and other countries outside of Europe can personally enroll and send medical records to the University of Pennsylvania, which enters the data. In Europe, due to different regulations, ACCELERATE is working with 10 clinical sites to collect patient data.

The goal is to enroll up to 1,000 patients within the first five years, using clinical data and available tissue samples to create a globally shared, virtual biorepository that facilitates collaboration.

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Source: University of Pennsylvania news release, October 27, 2016.