A Culture Dedicated to Advancing Research

The Castleman Disease Collaborative Network (CDCN) is a global initiative dedicated to accelerating research and treatment for Castleman disease (CD) to improve survival for all patients with CD. We work to achieve this by facilitating collaboration among the global research community, mobilizing resources, strategically investing in high-impact research, and supporting patients and their loved ones.

CD describes a group of inflammatory disorders that vary from a single enlarged lymph node to life-threatening multiple organ failure. CD is diagnosed in approximately 4,300 to 5,200 patients of all ages each year in the U.S.

Our story began when third-year medical student David Fajgenbaum was struck and almost killed by Castleman disease. After several relapses and recoveries, plus a completed medical degree, the Castleman Disease Collaborative Network (CDCN) was co-founded in 2012 by Dr. David Fajgenbaum and Dr. Frits van Rhee (of the University of Arkansas for Medical Sciences). The goal from the start was to accelerate research to find a cure for Castleman disease (CD) and improve survival for all patients with CD. Drs. Fajgenbaum and van Rhee quickly brought together a global team of other physicians, researchers, patients, and loved ones, and their collaboration has made tremendous progress over the last five years.

When Drs. Fajgenbaum and van Rhee began, their first step was to take stock of 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 was no consensus on the criteria for diagnosing CD.
• Finally, the trigger, problem cell types, role of genetics, and activated pathways were not well understood and the disease model made no sense.

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

To overcome these barriers, and the many other obstacles that exist in the Castleman disease field, we partnered with Greg Pacheco and the Castleman’s Awareness & Research Effort (CARE) to turn the process on its head. We facilitate collaboration among the global research community and strategically invest in high-impact research,  choosing what to study and finding and funding the best researcher for the job.

Our progress has only been possible because groups of physicians, researchers, patients, and loved ones have all joined together.