Castleman disease: The CDCN's unique approach to accelerating research

What is the history of CDCN?

The CDCN was founded in 2012 by Dr. David Fajgenbaum and Dr. Frits van Rhee because of an urgent need to advance research and improve care for patients living with CD.

Dr. Fajgenbaum himself has idiopathic multicentric Castleman disease (iMCD). It was when he relapsed while on the only available medication that he realized that the medical community was unlikely to make progress in time to treat him. He then joined forces with Dr. van Rhee to create the CDCN to accelerate research on an international scale and began to conduct research into the disease himself.

With the support of patients, relatives, doctors, researchers, volunteers and donors, the CDCN has developed a strategy to collect the most promising research leads and recruit researchers to continue the work. 

The CDCN is also working on drug repositioning and studying the potential role of FDA-approved specialties in various rare diseases with few or no treatment options, such as Castleman disease.

What challenges has the CDCN faced in advancing research?

The creation of the CDCN stemmed from the identification of several factors that were hindering the progress of CD research.

First of all, there was a lack of collaboration between doctors and researchers in their various activities. Secondly, a lack of consensus on diagnostic criteria combined with a general lack of understanding of the disease led to much confusion and misinformation about the disease and its manifestations.

More generally, the biomedical research approach is not optimal in the context of CD. Research is not conducted as part of a comprehensive strategy and projects do not necessarily build on other ongoing or previous work. There are few communication tools for researchers to connect with each other and competition for research funding works against a collaborative approach.

Finally, patients are often not included in discussions about research, even though they are at the heart of clinical work and trials.

What approach has the CDCN taken to optimize the research process for Castleman disease?

The CDCN has devised an 8-step model to create a community, prioritize different objectives, accelerate research and clinical trials, and disseminate information to patients and health professionals.

Source: CDCN

This approach has brought together doctors and researchers from all over the world and has created an international scientific advisory board.

A patient network has also emerged and by 2020 the CDCN community numbered over 1,200 patients and relatives.

Thanks to this community of patients and experts, the CDCN has been able to gather and prioritize the various research studies to form an international research agenda. This prioritization of work allows the CDCN to respond to patient priorities and to organize the distribution of funding and resources allocated to each project. 

Targeted fundraising is then carried out in the form of events and galas, individual donations and partnerships with private players or foundations. Patients and doctors around the world are also involved in the collection of samples and medical data needed for research and are also solicited for clinical trials.

For more information, read our article on tissue sample donation in Castleman disease research.

When studies are carried out, the CDCN helps to coordinate the various collaborators and establish research agreements. And once the study is completed, the data is analyzed, synthesized and published to share this new knowledge with the international scientific community.

What are the main achievements of the CDCN?

Since its creation, the CDCN has made great strides in accelerating research by involving patients, relatives, clinicians and researchers and has been recognized as a model for rare disease research organizations.

Through this initiative, more than 800 doctors and researchers from 65 different countries have been brought together. This large-scale collaboration has resulted in the analysis of more than 1,000 tissue samples from patients in more than 40 ongoing or completed studies, resulting in more than 30 publications that have been disseminated to the scientific community.

CDCN researchers have made significant contributions to knowledge about CD. These contributions include:

• The description of a new consensus model for the disease
• The creation of a unique ICD-10 code for CD to allow patients and doctors to easily treat it and navigate insurance.
• The establishment of the first diagnostic criteria for iMCD.
• Publication of the first treatment guidelines for iMCD.
• Discovery of the first novel treatment target for unicentric Castleman disease (UCD).
• Discover of the first novel treatment target for iMCD in 25 years.
• The opening of the first ever clinical trial for treatment-refractory iMCD.

For more information, please see our article on the progress of research in CD. 

The success of the CDCN also relies on the active participation of patients and their relatives. The collection of patient records via the ACCELERATE registry has resulted in the collection of clinical data from more than 360 patients, which are analyzed to assess the effectiveness of treatments and to study the evolution of the disease. In addition, the blood and tissue donations of more than 120 patients registered in the biobank are used to support a wide range of research. 

The CDCN has radically changed the pace of CD research. Over the past 7 years, the CDCN has spent over $1 million on research which has led to over $7 million in additional funding. 

What are the CDCN's priorities?

• Support and involvement of patients and their families
• Collaborative research on the different types of CD 
• Expanding the ACCELERATE registry and biobank
• Organization of awareness-raising events and fundraising campaigns 
• Raising awareness and educating the medical community
• Launching clinical trials
• Securing partnerships 
• Creating communication materials and writing publications
• Recruiting volunteers
• Applying the CDCN collaborative research approach to other rare diseases

For more information:

Don't hesitate to visit the CDCN (Castleman Disease Collaborative Network) website for more information. 

You can also join the Castleman Disease forum on Carenity to share your experience, find support and exchange information with other patients or relatives.

If you are interested in having your voice heard, let us know! Share your experience with Castleman disease with our members. Would you like to share your story? If so, feel free to contact us at this address: contact@carenity.us

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