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The Castleman Disease Collaborative Network (CDCN) is fighting to cure Castleman disease through a first-of-its-kind model. Rather than simply contributing funds into the existing biomedical research system, the CDCN has decided to take a more systematic, coordinated approach. They’ve built a global network, created collaborative tools to enable real-time dissemination of information, identified high-impact research opportunities from within the network, and begun to fund essential projects. They believe this approach will result in quicker pace and less randomness to achieve major breakthroughs. And, their diverse leadership team that includes patients and loved ones, physicians, scientists, students, and biotech entrepreneurs has enabled them to combine the patient-focus and urgency of a patient advocacy organization with the laser-focus and innovation of a biotech.

Dr. David Fajgenbaum, co-Founder & Executive Director of the CDCN, brought together this team to advance treatments and a cure for Castleman disease.  When Fajgenbaum began his research into multicentric Castleman disease (MCD), a deadly and poorly-understood hematologic disorder, in 2011, he was struck by how little was known about the basic mechanisms of the disease. Quickly, he realized that the state of knowledge was not the only problem, it was also the process and pace of research that was concerning.  Research for Castleman disease, like many other rare (and even deadly) diseases, was underfunded and silos existed between the few researchers studying it. Terminologies and subclassifications differed between institutions and the concept of Castleman disease pathogenesis “didn’t make sense” according to Fajgenbaum. 

Dr. Fajgenbaum, who had previously co-founded another nonprofit organization and conducted early strategic planning for the Penn Center for Orphan Disease Research & Therapy, set out in 2012 to accelerate research and treatment for Castleman disease by: 1) synthesizing what is known about idiopathic Multicentric Castleman disease by conducting a systematic review and 2) creating a global collaborative research network to streamline progress (now the CDCN). He teamed up with Dr. Frits van Rhee, a global authority on Castleman disease at the University of Arkansas for Medical Sciences, Chris Nabel, a classmate and current MD-PhD student at the University of Pennsylvania, and Dr. Arthur Rubenstein, Dean Emeritus and Professor of Medicine at the University of Pennsylvania School of Medicine.

Fajgenbaum’s research prompted him to propose a new classification system for MCD (based on HHV-8 status) and a paradigm shift in concept of pathogenesis (lymph node changes are not “benign tumors” that secrete cytokines, but reactive changes due to excessive cytokine release from an as-yet unknown cause), which was published in May 2014 in the journal Blood.

In just 2 years, that team of Fajgenbaum, van Rhee, Nabel, and Rubenstein has grown into a 10-member leadership team, a 23-member Scientific Advisory Board, and a global network of 200+ physicians and researchers that have made major progress to accelerate research. The CDCN has coordinated the two largest-ever meetings of experts at ASH 2012 and 2013, launched a platform for online discussion among these physicians and researchers, developed a global research agenda, established a strategic partnership with Janssen pharmaceuticals, and launched a global patient community in partnership with EURODIS and NORD at www.rareconnect.org/en/community/castleman-disease.

Current strategic priorities include: 1) establishing a global patient registry, 2) empowering the global patient community to support one another and join the fight against CD, and 3) distributing high-impact research grants.

Progress has been made, but there is lots of work to be done. It’s essential that all patients, loved ones, physicians, and researchers join together to take on this deadly disease.

Together, we will beat Castleman disease.

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