CDCN Publishes on the Collaborative Network Approach

CDCN leaders David Fajgenbaum, Mary Zuccato, and Dustin Shilling publish an article on our Collaborative Network Approach as a model for advancing rare disease research

Castleman disease before the CDCN

4/18/2019 When the CDCN was founded in 2012 with the goal of curing Castleman disease, the failure of the traditional research approach to Castleman disease was evident: there were few published studies, limited sample sizes, little collaboration between researchers, no uniform nomenclature, poor understanding of the mechanisms of Castleman disease, and zero diagnostic criteria or treatment guidelines. The CDCN recognized immediately that a new approach would be needed to help find a cure for Castleman disease as fast as possible. The CDCN imagined that instead of the traditional approach where physicians, researchers, and patients worked separately to help fight against a disease, a cure could be found faster and more efficiently if everyone was brought together to take calculated steps toward specific agreed-upon goals. The CDCN thus created the Collaborative Network Approach in hopes that it would help upend the status quo and rapidly push forward the pace of high-impact research for Castleman disease.

Advancing Research at New Speeds

Now, seven years after the founding of the CDCN, Castleman disease research is moving faster than ever before! In the 2018 calendar year, there were more research publications that mentioned Castleman disease than ever before in history. From the publishing of the Diagnostic Criteriafor idiopathic multicentric Castleman disease (iMCD) in 2017, the Treatment Guidelines for iMCD in 2018, and the ~30+ other studies that can be found on our Research Pipeline, the Collaborative Network Approach has proved itself to be a highly effective method for accelerating the pace of research of a rare disease.

Unfortunately, many other rare diseases are not as lucky. There are about 7,000 different rare diseases affecting almost 1 in 10 Americans, but shockingly 95% of these diseases have no FDA-approved treatment. Despite ample funding, treatment for rare diseases has continued to struggle while using the traditional research model. After the CDCN realized that the Collaborative Network Approach appeared to be a more effective model for research, the CDCN wanted to help share this apporach to benefit other rare diseases.

Our Collaborative Network Approach

CDCN leaders David Fajgenbaum (Co-Founder), Mary Zuccato (COO), and Dustin Shilling (Former Senior Scientific Advisor) published “The Collaborative Network Approach: A model for advancing patient-centric research for Castleman disease and other rare diseases” in a 2019 review article in the journal Emerging Topics in Life Sciences. This paper outlines the CDCN’s novel strategy to accelerate research and reach the goal of finding an effective treatment for all Castleman disease patients. The Collaborative Network Approach relies on the entire community– patients, physicians, and researchers– and succeeds because of the hard work of community members, volunteers, patients, physicians, and researchers working together toward a common goal. The CDCN hopes that other rare disease fields can benefit immensely from shifting to this approach that brings together all parts of the community. The full paper can be read here and a basic outline of the approach is below.

 

  • Want updates on the progress of all of our research updates? Check out our Research Pipeline for a full listing of CDCN research with a study description and funding status for each study.
  • Interested in donating to the CDCN to help fund high-impact Castleman disease research? Donate here!
  • Interested in donating medical records for the ACCELERATE Natural History registry? Learn more here!
  • Interested in donating tissue samples to be used for high-impact research? Thank you! Learn more here!
  • Questions about the CDCN? Email: info@castlemannetwork.org
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