Leveraging information and collaboration to cure disease

Abstract

Despite many medical breakthroughs in the last century, many diseases are still devastating and incurable. One such disease is idiopathic multicentric Castleman disease (iMCD). iMCD is a deadly hematologic illness where the immune system attacks and shuts down the body's vital organs for an unknown cause. Several barriers related to funding, classification systems, (lack of) diagnostic criteria, studies with small sample sizes, and collaboration slowed progress for iMCD. The traditional model for how to advance biomedical research also had many shortcomings. The Castleman Disease Collaborative Network (CDCN) was created in 2012 to take an innovative, "collaborative network approach" to accelerate research and treatment for Castleman disease. The CDCN has facilitated collaboration, leveraged available information, coordinated research, and engaged key stakeholders to make paradigm-shifting progress. The vital steps, key progress, and lessons learned are shared in this paper.