San Francisco, CA - The CDCN's third-annual "Accelerating Research & Treatments for Castleman disease" weekend, which included over 75 physicians, researchers, patients, and loved ones, will go down in history as a major turning point in the international battle against Castleman disease (CD), particularly multicentric CD (MCD). MCD is a deadly and poorly-understood disorder involving immune system hyperactivation and multi-system organ failure that sits at the nexus of hematology, virology, and immunology. Highlights from the weekend included:
- CDCN's Scientific Advisory Board (SAB) finalizing plans for the first-ever global patient registry/natural history study of CD,
- CDCN's SAB building consensus behind its plan for solving CD in 2015 through its International Research Agenda (IRA),
- Hosting the first-ever "Beating Castleman's, Together" Patient/Loved One Summit (photos),
- Hosting the third-annual "Accelerating Research & Treatments for Castleman disease" meeting (photos), and
- Presenting meta-analysis data on the largest-ever series of patients with idiopathic Multicentric Castleman disease (iMCD).
The global patient registry/natural history study of CD, which will be called ACCELERATE, will combine data from physicians and patients around the world to better understand the deadly disease and facilitate future research. The registry will use an innovative design that the SAB developed and will provide insights into diagnosis, treatment, and outcomes. Dr. David Fajgenbaum, CDCN co-Founder & Adjunct Assistant Professor of Medicine in the Division of Hematology/Oncology at the University of Pennsylvania, will serve as Principal Investigator. “This registry and natural history study will be transformative for the field and for patients battling MCD,” said Dr. Fajgenbaum (click here for more background on the registry). It will be conducted through a three-way partnership. Details are being finalized and will be announced in early 2015.
Highlights from the first-ever "Beating Castleman's, Together" Patient/Loved One Summit included:
- Castleman disease messed with the wrong people! We're gonna take it down!
- We're all going to officially become "Castleman Warriors" to help raise funds and awareness for research!
- We need to raise awareness among our family and friends that we need them to help us beat this disease. As Carl reminded us, the main thing is to ask. Now is the time to ask, especially since we have research studies waiting to be launched.
- We are all going to post a #WarriorStance photo and tag the CDCN on facebook.
Highlights from the 3rd annual "Accelerating Research & Treatments for Castleman disease" meeting included:
- All physicians need to join the CDCN Community (click here) so they stay up to date on progress and participate in the development of a diagnostic criteria.
- The CDCN will launch a global patient registry in 2015 and need to all enroll in the registry.
- Physicians/researchers should consider applying for funding for research (click here).
- Physicians need to publish case reports and cases series of iMCD.
- TAFRO (Thrombocytopenia, Anasarca, Fever, Reticulin Fibrosis/Renal dysfunction, Organomegaly; often with small lymph nodes or hyaline vascular features in lymph nodes) features have been reported frequently in Japan, but docs in US and EU reported that they see these cases too.
- The CDCN will develop a diagnostic criteria for idiopathic MCD in 2015.
- Pediatric cases occur and are under-recognized.
- The priority research studies for 2015 include: viral discovery/hunting, serum proteomics, intracellular inflammatory pathway identification, identification of the pathological cell
Approximately 4,000-6,000 Americans are diagnosed annually with Castleman disease, which includes MCD and the less-severe unicentric Castleman disease (UCD). MCD can present variably from flu-like symptoms in some cases to leukemia-like crises and even sepsis-like organ failure. MCD affects children through older adults and has an approximately 65% 5-year survival rate.