We are so thankful for all of the patients, loved ones, physicians, researchers, and community members from around the world who continue to support the fight against Castleman disease (CD) and our life-saving work to identify treatments for all patients with Castleman disease. Below is a listing of some of our top priorities for 2020 that are well underway:
1) Enroll patients into our drive for ‘Our Samples. Our Data. Our Cure.’
We are partnering with the Broad Institute at Harvard and MIT to perform a large sequencing study of blood from 300 HHV-8-negative/idiopathic multicentric Castleman disease (iMCD) patients! All 300 iMCD patient samples must be submitted to the Broad Institute for sequencing by May 31st, 2020. We have made it as easy as possible for you to help. We’ll send you a kit in the mail, which you can take to a nearby Quest Diagnostics lab for the blood draw, all costs are automatically covered for anything involved in sample collection. Note: COVID19 is causing some challenges with sample collection, but please contact us if you’re interested!
2) Ramp up enrollment into our ACCELERATE registry
ACCELERATE is the first-ever registry for Castleman disease patients. It’s a research study designed to help physicians and researchers better understand Castleman disease, uncover patterns in the disease, and improve treatment. The goal of the registry is to combine medical data from hundreds of patients with Castleman disease so that researchers can discover patterns and clues that may help physicians better understand and treat Castleman disease.
3) Obtain samples for research
Donating samples to help advance our life-saving research is one of the most important ways you can join in the fight against your disease. The CDCN’s Castlebank allows patients to contribute previously collected and future blood and lymph node samples towards research.
With your help, we can continue to grow our biobank so that it can support research, help us to better understand CD, and hopefully one day lead to a cure for Castleman disease.
4) Inform patients about an exciting clinical trial
A clinical trial for the medication sirolimus is open for patients with idiopathic/HHV-8-negative multicentric Castleman disease (iMCD) at the University of Pennsylvania and the University of Arkansas for Medical Sciences.
This is the first clinical trial of iMCD in the US in over five years. Idiopathic (HHV-8-negative) multicentric Castleman disease patients must be experiencing symptoms despite treatment with siltuximab or tocilizumab in order to be eligible to enroll.
5) Grow our community of patients and loved ones
The CDCN is committed to supporting patients and loved ones through their battles with Castleman disease (CD).
We strive to ensure that people living with CD are educated about their disease, feel connected to our community, have access to experienced physicians, are informed of research underway and know how to join the fight! Whether you are a person living with CD or a loved one of a person affected by CD, we hope that you will leverage these resources and engage with the CDCN to find the best possible care and to help us find a cure.
6) Expand our community of physicians & researchers
Since our founding in 2012, the CDCN has harnessed the power of its global network of physicians and researchers to relentlessly pursue a cure for Castleman disease. The CDCN has funded or supported over 30 high-impact studies that have led to breakthroughs including the first-ever diagnostic criteria, the first-ever treatment guidelines, the discovery of a novel treatment target for iMCD (mTOR pathway) and sirolimus as a new treatment, and more. Physicians & researchers can join the CDCN’s physician & researcher community to gain access to all resources in this section.
7) Advance studies on the CDCN’s Research Pipeline
Check out the CDCN’s ground-breaking Collaborative Network 8-step approach to accelerating research and a complete listing of all research studies in process around the world!