4/23/2021 We are please to announce our new partner organization, the Chinese Castleman Disease Network and their patient organization, Castleman Home. These two organizations have partnered together to help lead research and patient support in China. Dr. Zhang Lu’s organization CCDN is doing disease research, and Castleman’s Home is is connecting patients and their loved ones to the appropriate physicians who can treat these CD patients correctly.
Dr. David Fajgenbaum and Mileva Repasky -members of the CDCN – were able to support through video, offering messages of support and welcoming the patients and their loved ones on the Founding day of this new partner organization.
On January 23, 2021, China Castleman’s Disease Collaboration Network(CCDN) held a launch meeting online. The meeting was led by the Director of CCDN, Dr. Jian Li from Peking Union Medical College Hospital (PUMCH) who committed to the research of Castleman Disease for many years, including “Phase 2 study using oral thalidomide-cyclophosphamide-prednisone for idiopathic multicentric Castleman disease” which was published in ” Blood” and had been incorporated into the NCCN guidelines (2020).
Dr. Lugui Qiu and Dr. Daobin Zhou and all the members of the CCDN attended the meeting, including 43 clinicians and 3 pathologists. Dr. Lugui Qiu and Dr. Daobin Zhou started the meeting off with an introduction of CCDN- a milestone for Castleman’s Disease patient care and research in China. Dr. Yujun Dong from Peking University First Hospital gave a special report on Castleman’s disease diagnosis and treatment progress and new drug breakthroughs, including the common manifestations of Castleman’s disease, the diagnostic ideas and treatment changes of iMCD, and the breakthrough of treatment with new drugs.
Dr. Li Jian shared the mission and vision of CCDN and the work plan in 2021. Dr. Li Jian expressed the hope that CCDN would establish a communication platform for domestic research on Castleman’s disease, which would also help to conduct a nationwide registration study of Castleman’s disease patients, promote Castleman diagnosis rate and treatment efficacy in China, and improve the survival of patients with Castleman’s disease in China. CCDN also aimed to establish an expert consensus on Castleman disease in China, standardize the diagnosis and treatment of Castleman disease, train a specialist in Castleman’s disease at each member hospital of CCDN, support patient education, and promote the growth of patient organizations.
Dr. Lu Zhang introduced nationwide registration study of Castleman’s disease. Through the review data, we try to understand the clinical characteristics of Chinese patients with Castleman’s disease, and provide more professional and powerful basis for the targeted diagnosis and treatment plan for the patients with Castleman’s disease at different stages.