Since it was founded in 2012, the CDCN has made immense progress in accelerating the search for a cure, improving patient care, and harnessing the power of patients, loved ones, clinicians, and researchers to raise awareness about Castleman disease and build community. Through an innovative collaborative network approach, the CDCN has assembled a global network of experts while ensuring that the top researchers have the funding they need to make meaningful contributions that will directly help find a cure for Castleman disease. The CDCN has flipped the traditional model of rare disease research on its head, and in doing so, it has been recognized as a model for patient-led rare disease research organizations by the Chan Zuckerberg Initiative.
By establishing a global collaborative network, the CDCN has connected over 800 physicians and researchers in 65 countries. In addition, the CDCN is led by a scientific advisory board of 3 expert physicians and researchers who set research priorities and evaluate research discoveries. This large scale collaboration has led to the analysis of over 1000 patient samples, in over 40 active or completed studies which has led to over 30 peer-reviewed publications so that the CDCN’s discoveries are readily disseminated to the scientific community.
Some of the tremendous contributions that CDCN researchers have made to the knowledge about Castleman disease include:
- Establishing the current state of medical knowledge for CD and flipping the previous disease model on its head (Blood 2014)
- The creation of a unique ICD-10 code for Castleman disease to allow patients and physicians to easily treat Castleman disease and navigate insurance
- The first diagnostic criteria for idiopathic multicentric Castleman disease ever
- The first treatment guidelines for idiopathic multicentric Castleman disease ever
- The first novel treatment target for unicentric Castleman disease (UCD) ever
- The first novel treatment target for idiopathic multicentric Castleman disease in 25 years
- The first clinical trial opening for treatment-refractory idiopathic multicentric Castleman disease ever
The CDCN’s success hinges on the participation of patients and their loved ones. Through participation in ACCELERATE, the first Castleman disease Natural History registry, the clinical data of over 360 patients is able to be analyzed to evaluate the effectiveness of treatments and investigate potential trends in the disease pattern. Additionally, the generous blood and tissue donation of over 120 patients in the biobank allows Castleman disease research to keep up with the relentless pace set forth by the CDCN research pipeline.
Through its innovative approach, unprecedented results, and relentless leadership, the CDCN has radically transformed the pace of Castleman disease research which has led to the most Castleman disease studies ever published in 2018. Additionally, CDCN funding has served as a springboard for further funding by academic, government, and corporate organizations. In the past 7 years, the CDCN has spent over $1 million on stakeholder-prioritized research, which has led to over $7 million in additional funding for major breakthroughs. Not only does this approach have a compounding effect, it also is extremely efficient, with over 90% of all CDCN funding going directly to research.
More research is critical. Few diseases have been cured, especially rare diseases. The road to a cure will continue to be difficult, but we’re on the right path, have made unprecedented progress, and have the team to do it. We need your help by donating funds for further research, helping to spread the word about this unique opportunity to be a part of a cure, and if you’re a patient, to donate your samples, medical data, and perspectives to our research.