Patients, loved ones fight back against Castleman's by contributing blood, spit, and left over specimens for research!
We have a lot to learn about Castleman disease, such as what causes it, which immune cells are activated, and how to stop it, and we (patients) have the opportunity to drive forward our understanding and treatment by contributing research samples. Quinn (left), her mother Shannon, and their family recently had a 'spit party' where everyone contributed saliva for a genomics study. The CDCN is conducting several research studies into the genetics, cause, and key cell types. We are also preparing to launch a biobank and finalizing the details for the first-ever global patient registry and natural history study of Castleman disease, called ACCELERATE. If you are a patient or parent of a child with Castleman disease, please fill out this brief survey by clicking here. This is a tough battle, but the answers to the unknowns of Castleman disease are within each of us. If we all play our part, we will find a cure for this terrible disease once and for all! Learn more at: http://www.cdcn.org/answers
Dr. Alexander Fossa of Norway contributes samples to enable three high-impact studies!
Alexander Fossa, MD, PhD, is a senior consultant in Oncology at the Norwegian Radium and Oslo University Hospitals. He is the primary treating physician of Castleman’s disease in his region, has a keen interest in Castleman’s (as one of the first patients he treated as a resident had MCD), and was an investigator on the clinical trial of siltuximab (anti-IL-6), which is the only FDA- and EMA-approved therapy for MCD. He is providing essential samples for several important studies in our research pipeline, which hope to identify the cause, key cell types, and a diagnostic test for Castleman's. Dr. Fossa has provided the most samples for the HUNT study, control samples for HUNT II, and serum samples from for SPEED II. Without his continued work and samples from other collaborators, these studies would not be possible. Check out the CDCN's International Research Agenda/Research Pipeline at: www.cdcn.org/research-pipeline
Castleman Warriors meet monthly to support one another and plan their attack on Castleman's!
Are you a patient or loved one? Ready to join the fight? It’s easy to become a Castleman Warrior!
Please click here or email firstname.lastname@example.org to learn more about the program.
Penn Hiring for International Natural History Registry
The University of Pennsylvania, a world-renowned leader in education, research, and innovation, will be the headquarters for the CDCN's Patient-Powered, International Natural History Registry. Penn is hiring a Clinical Data Specialist (CDS) to help run the study. The CDS will need clinical experience and training. The CDS will join two other team members and Principal Investigator/Patient, Dr. David Fajgenbaum. Click here for more about this position and to apply.