Rare Disease Report

Advocacy Spotlight: Castleman Disease Collaborative Network

MAY 24, 2016
The Castleman Disease Collaborative Network (CDCN) is dedicated to advancing treatment options for Castleman disease. This global initiative supports research, forms collaborative partnerships, promotes events to raise awareness and funding for CDCN, and provides support and information to patients. The organization has fundamentally reshaped the research world of this rare, mysterious disease.

About Castleman disease

Castleman disease (CD) describes a group of rare life-threatening inflammatory disorders that affect lymph nodes and related tissues. Inflammation in the lymph tissues can cause flu-like symptoms and dysfunction in vital organs like the liver and kidney. About half of CD patients have unicentric CD (UCD), which affects a single lymph node region. The rest have multicentric CD (MCD) affecting multiple areas of the body.
The cause of CD is not understood, though autoimmune factors and viral infection may play a role. Though CD is technically not considered a cancer, it has many overlapping features with lymphomas, and many patients with CD eventually develop blood cancers.
Surgical treatment for UCD is available, and immunosuppressive therapies and chemotherapy can be used to treat MCD. But only about ⅔ of MCD patients are alive 5 years after their diagnosis.

About CDCN

Dr Frits van Rhee of the University of Arkansas for Medical Sciences and Dr David Fajgenbaum of the University of Pennsylvania founded CDCN in 2012. Dr Fajgenbaum had just returned to medical school after a year spent battling CD as a patient.
After studying the current state of research in CD as well as the traditional models of rare disease research, the co-founders decided to take a different approach. In the CDCN, research would be performed as part of an overarching strategy, in an atmosphere that promoted building on previous research and collaborating with other researchers. Researchers would have the tools to connect with each other, and patients would be actively included in research discussions.
An initial central focus of CDCN was building the community. This has been accomplished through the three largest ever CD research meetings, an online discussion board of researchers, and an international scientific advisory board. Throughout, patients have been able to participate in discussion boards, the Scientific Advisory Board and Leadership team, patient summits, and in the creation of educational materials.
CDCN has also worked to clarify the current state of medical knowledge for CD. They found a great deal of inaccurate information, a disease model that made little sense, and researchers using different conflicting classifications systems. CDCN has reshaped the understanding of CD and is currently working to establish international diagnostic criteria for the condition. CDCN has also identified high-priority research projects for an International Research Agenda (IRA) to streamline research efforts.
Supporting research is a central goal of CDCN. Through the Castleman warriors program, CDCN raises funds and awareness of CD. CDCN has actively encouraged donation of tissue samples to be used by researchers. The organization is also about to initiate a patient registry leading to a natural history study of CD. CDCN also actively promotes researchers to tackle the highest priority projects in the IRA. In 2015, CDCN invested almost $200,000 in such studies.
In an interview with RDR, Dr Fajgenbaum describes the general tone of the CDCN community. Speaking of a patient gathering, he said, “One of the messages that was consistent throughout the day was that Castleman afflicted the wrong people. It made a mistake by messing with our group of patients. By messing with us, we’re going to take this disease on and solve it really soon.”
In the small number of years since the organization began, CDCN has succeeded in transforming the ways researchers fundamentally think about CD, simultaneously changing how research in CD is done. It is a model that other rare disease advocacy groups might do well to emulate.

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