During the ASH 2014 Special Program, Fajgenbaum also discussed the Castleman Disease Collaborative Network (CDCN) in his presentation titled, “CDCN an International Research Agenda.” He discussed his perspective on the next steps, noting that the international research agenda needed to further elucidate the pathogenesis of MCD and discover new targeted agents.
The CDCN was developed in August 2012 by a group of physicians and researchers to accelerate research and facilitate collaboration among the global research community. The CDCN has coordinated the largest-to-date meeting of MCD researchers and physicians, developed a database of more than 200 treating physicians and researchers worldwide, launched a platform for private communication and online discussion among iMCD physicians and researchers, assembled a 23-member Scientific Advisory Board of experts from around the globe, and developed an initial scientific agenda. (More information about the CDCN and a forum for iMCD physicians and researchers to communicate with one another can be accessed at www.castlemannetwork.org.)
Important next steps for the field, and priorities for the CDCN, include developing an international consensus criterion on diagnosing iMCD, creating a patient registry with a virtual tissue repository, offering research funding, collecting patient quality-of-life data, and facilitating greater collaboration with rheumatologists, immunologists, and virologists. With these steps in motion, and with continued engagement from the global iMCD physician and researcher community, the potential for progress in our understanding and treatment of iMCD is great, according to Fajgenbaum. He called on the attendees of the program to become involved in the CDCN activities, and to help define priorities to advance MCD research and patient care, as well as to determine key action steps for the CDCN, clinicians, and researchers to uncover the pathogenesis of iMCD.
