User:CDK55/Castleman Disease Collaborative Network

= Castleman Disease Collaborative Network = The Castleman Disease Collaborative Network (CDCN) is a global initiative dedicated to advancing research and treatment for Castleman disease and other related disorders. It is a global community of Castleman disease patients, loved ones, physicians, and researchers that uses a collaborative network approach to support patients and advance high-impact research studies.

History
The Castleman Disease Collaborative Network was founded in 2012 by Dr. Frits van Rhee and Dr. David Fajgenbaum after Dr. Fajgenbaum was diagnosed with idiopathic multicentric Castleman disease as a medical student in 2010. Soon after its creation, the CDCN merged with the Castleman's Awareness and Research Effort (CARE).

Dr. Fajgenbaum has served as the executive director of the CDCN since its founding.

Collaborative Network Approach
The CDCN pioneered a unique collaborative network approach to advance research on Castleman disease. This 8-step model consists of:


 * 1) Building a community: The CDCN supports a global network of Castleman disease patients, loved ones, physicians, and researchers.
 * 2) Crowdsourcing and prioritizing research: Castleman disease patients, loved ones, physicians, and researchers collaborate to propose research ideas and prioritize high impact studies.
 * 3) Identifying top researchers: The CDCN identifies and recruits highly qualified researchers to conduct studies.
 * 4) Fundraising: Funding for high-impact studies is raised through grants and fundraising initiatives.
 * 5) Sample procurement and patient enrollment: The CDCN works to identify participants for clinical trials and laboratory studies. The CDCN recently established a biobank for collection and sharing of biospecimens.
 * 6) Study execution: The CDCN continues to stay involved during the study execution phase by fostering connections between the multiple collaborators.
 * 7) Data analysis/identifying treatments: The CDCN places special emphasis on identifying new drug targets for treating Castleman disease.
 * 8) Knowledge dissemination: The CDCN publishes results of research studies in journals and publicizes the results within the patient community.

Activities
The CDCN is a global collaborative network focused on Castleman disease. It is involved in research, raising awareness, and patient support.

Research
The CDCN provides grant funding to support research on the etiology, pathogenesis, diagnosis, and management of Castleman disease. The CDCN is involved in longitudinal research initiatives designed to facilitate multiple projects.

ACCELERATE Natural History Study
The ACCELERATE (Accelerating Castlmean Care with an Electronic Longitudinal registry, E-Repository, And Treatment Effectiveness research) natural history study is a collaborative project between the CDCN, Janssen Pharmaceuticals, and the University of Pennsylvania. It is a database of clinical information drawn from patients diagnosed with Castleman disease and includes symptoms, laboratory tests, imaging, pathology, and treatment approaches. The ACCELERATE study was designed to document the natural history of Castleman disease, range of clinical features associated with the disease, and response to treatment. Patients can enroll themselves in the ACCELERATE study online.

Castlebank
The Castlebank is a collaboration between the CDCN and the University of Pennsylvania to house a centralized Biobank of tissue samples donated by patients with Castleman disease and collected from researcher around the world. The Castlebank is used to support collaborative research projects requiring tissue samples.

Castleman Warriors
The Castleman Warriors are a group of patients and loved ones who work to raise awareness, raise funds, and support patients with Castleman disease.

World Castleman Disease Day
World Castleman Disease Day was established in 2018 and takes place every year on July 23rd.

Patient Summit
Every year, the CDCN hosts a patient summit in Philadelphia for patients diagnosed with Castleman disease and their loved ones. The summit includes educational activities, updates on research, and social activities.