The CDCN is a global initiative dedicated to accelerating research and treatment for Castleman disease (CD). We work to achieve this by facilitating collaboration among the global research community, strategically investing in high-impact research, and supporting patients and their loved ones. Click here to check out our 2016 Community Update in English! Click here for the Portuguese version. Click here for the Spanish version. Click here for the French version.
CD Research Needed Progress
In 2012, CDCN co-founders, Dr. Frits van Rhee of the University of Arkansas for Medical Sciences and Dr. David Fajgenbaum, who is also a patient, joined together to accelerate research and treatment for Castleman disease (CD). Their first step was to grasp the current state of CD research. They observed major gaps in our knowledge of the disease and uncovered issues that were slowing progress, including:
• Physicians and researchers were using different sub classification systems and rarely collaborating.
• There was a great deal of inaccurate information. For example, a top medical resource for physicians stated that only “four cases had ever been reported of HHV-8-negative MCD [multicentric CD]…one is alive.” A more recent review by CDCN researchers found over 600 reported HHV-8-negative MCD cases.
• There were not consensus criteria for diagnosing CD.
• Finally, the trigger, problem cell types, role of genetics, and activated pathways were not well understood and the disease model did not make sense!
A New Approach Was Needed to Advance Research
Dr. Fajgenbaum studied the rare disease research field alongside Dr. Arthur Rubenstein at the University of Pennsylvania and found systemic issues within the larger biomedical research community that were also slowing progress for CD research. The traditional model, which generally involves research organizations raising funds and inviting individual researchers to apply to use the funding how those researchers determine, was not working — there had to be a better way. Drs. Fajgenbaum and Rubenstein identified the following problems within the traditional model:
• Research is not done as part of an overarching strategy
• Projects don’t necessarily build on other projects
• Competition for limited funding prevents collaboration
• Few communication tools exist for researchers to connect with one another
• Patients are often not included in discussions of research
Shortly after founding the CDCN, they decided to partner with Greg Pacheco and the Castleman’s Awareness & Research Effort (CARE) to join the two organizations together. The CDCN has made incredible progress since then. Click here to learn about the CDCN's impact and progress.
Message From Dr. Fajgenbaum
"I have a personal connection to the disease: it nearly killed me. During my third year of medical school, what started out as fevers and night sweats led to kidney, liver, and bone marrow failure. After three months of hospitalizations in critical condition and being read my last rites, I finally received my multicentric Castleman disease diagnosis. Treatment began right away, but I needed multi-agent chemotherapy before I eventually recovered — for a short time. I returned to medical school on a mission. I published research in the journal, Blood, which initiated a paradigm shift in the disease model and established a new classification system for the disease. I worked with Dr. Frits van Rhee to co-found the Castleman Disease Collaborative Network (CDCN) to accelerate research discovery internationally and find innovative treatments for the disease. We have prioritized the key research projects needed to improve diagnosis and treatment for the disease, and we’re running full speed after them. But none of us can do this alone. We need the entire community of researchers, patients, and their loved ones to join together to take down this disease."
David Fajgenbaum, MD, MBA, MSc
Co-Founder & Executive Director, CDCN
Research Assistant Professor of Medicine, University of Pennsylvania