To fight Castleman disease we need to understand it, and to understand it we must collect and study samples
CastleBank: The very first biobank of samples from Castleman disease patients
The Castleman Disease Collaborative Network (CDCN) is always considering the next step in research that will bring us closer to a cure. In 2017, we made a new stride toward that goal with the launch of the biobank, CastleBank.
A biobank is a collection of biological samples such as blood and tissue, which are stored in a way that protects the samples’ use for research. The samples are kept in a single location and made available to qualified researchers.
Battling against a rare disease
Because Castleman disease is so rare, access to blood or tissue samples from Castleman disease patients and healthy donors is a significant challenge for researchers. The biobank allows a more streamlined research process where researchers from around the world make progress in the fight against Castleman disease by using samples from the biobank.
How to donate
The best time to donate samples is when patients are newly diagnosed or are having a relapse of their symptoms. Samples that are donated during this time are far more likely to reveal clues about what Castleman disease is and does. Our team will handle all logistics and costs associated with donating a sample.
If you are willing to donate a sample and are newly diagnosed, currently hospitalized, or having a relapse or flare of your symptoms, please call or text us at (267) 586-9977 (cell) or email our Biobank coordinator, Johnson Khor at Castlebank@uphs.upenn.edu.
If you are interested in donating in the future, please fill out the form here.
Have questions? Please contact: Johnson Khor, Castlebank@uphs.upenn.edu (267) 586-9977 (cell)
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 will allow patients to contribute previously collected and future blood and lymph node samples towards research. It has a focused aim: help researchers make progress on Castleman disease more efficiently. Ours will be a disease-specific biobank, which means that all of the samples we collect will be for Castleman disease research.
With your help, we can build a robust biobank that encourages a much faster pace of research to understand and hopefully one-day cure Castleman disease. Any blood or tissue donation will be used for our high-impact studies that help us continue to battle this disease!
For UCD, extensive sequencing of lymph node tissue and studies of mutations recently found in lymph node tissue is currently under investigation, using lymph node tissue contributed to the ACCELERATE registry. Learn more about this here.
Hear from a few of our patients and loved ones on the importance of donating samples to for research:
“Although there is a lot to learn about this disease, there is so much more known now than 5 or 10 years ago. With the CDCN’s help, there will continue to be more and more information about Castleman disease in the years to come. Get involved with the CDCN, and give samples. Know that, by doing so, you are making a difference in the lives of so many patients and their family members”
— Laura Incorvia, Mother of Joey Incorvia; MCD Pediatric Patient
“If you’re able to donate to enable this research, or if you’re a patient who might donate samples and medical data, I hope you will. This isn’t just the CDCN’s fight or my fight. It’s Our Fight”
— Gary Gravina, MCD Patient
“Take control of your battle and fight back against Castleman disease. Together we can take this disease down and every sample donated brings us one step closer to a cure!”
— Mileva Repasky, Mother of Katie Repasky; UCD Pediatric Patient
I still have questions. Where can I find answers?
More information about the biobank registry, including Frequently Asked Questions, can be found here.
If you have any questions, please email our biobank coordinator, Johnson Khor, at Castlebank@uphs.upenn.edu or call 267-586-9977