Rare Disease Report

UPenn and Janssen Collaborate for 1st Global Patient Registry for Castleman Disease

OCTOBER 26, 2016
Andrew Black
An exciting step forward for the Castleman disease (CD) community. Its first global patient registry has begun thanks to a partnership between big pharma ( Janssen Research), advocacy (Castleman Disease Collaborative Network [CDCN]) and academia (University of Pennsylvania).
Known as ACCELERATE, the registry is patient focused and involves patients providing their medical records to look for trends across patient and to help extend the knowledge of CD. Any patient with CD anywhere in the world can register online to join the registry. The registry will be managed by UPenn and will add additional scientific expertise and patient engagement support provided by the CDCN.
The outcome of the registry is to provide knowledge that can help inform and potentially advance clinical understanding, treatment and patient outcomes and will be led by David Fajgenbaum, MD, MBA, MSc, an assistant professor of Medicine at the Perelman School of Medicine at the University of Pennsylvania and associate director of patient impact at the Penn Orphan Disease Center. Dr Fajgenbaum is also a Castleman disease patient and founder of CDCN.
The registry is targeting enrollment of up to 1,000 CD patients within 5 years of initiation, using the clinical data and available tissue samples to create a globally shared, virtual biorepository that will facilitate collaboration among researchers and patients across the world to help advance CD research. It will work with 10 clinical sites to collect patient data.
The web-based registry will be on the CDCN website along with ongoing updates about the registry at www.CDCN.org/ACCELERATE.

About Castleman disease

Castleman or Castleman’s disease is not a cancer but is very similar to certain types of lymphoma.  Like lymphoma, Castleman’s disease affects the lymph nodes and can cause flue-like symptoms, abnormal blood counts, and multiple organ dysfunction. It may require treatment with surgery, chemotherapy and/or radiation therapy.
Castleman disease is also referred to as giant lymph node hyperplasia, or angiofollicular lymph node hyperplasia.  It is a lymphoproliferative disorder involving an overgrowth (proliferation) and hyperactivation of immune cells, which causes organ dysfunction.
There are three subtypes of Castleman Disease - Unicentric Castleman disease, Human Herpes Virus-8 (HHV-8)-associated Multicentric Castleman disease, and HHV-8-negative Multicentric Castleman disease.
Last year, we talked with Dr Fajgenbaum about CD. A clip from that interview is shown below.

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