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.
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.
What to Donate?
Patients can choose to donate three types of specimens to our biobank.
- Blood: Once consented into the biobank, patients will receive a blood donation kit that they can take to a blood draw appointment at their physician’s office or a local Quest Diagnostics. To start the process, please email our biobank program manager at Castlebank@uphs.upenn.edu.
- Lymph Node Tissue From Future Surgery: If you are having lymph node removal surgery and would like to donate any excess tissue, please contact our biobank program manager at Castlebank@uphs.upenn.edu.
- Lymph Node Tissue From Prior Surgery: Patients can have their previously resected tissue donated through the ACCELERATE Registry. Sign up for the registry here: https://cdcn.org/accelerate.
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. You can share the Biobank Flyer here.
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 or email our Biobank Program Manager, Bridget Austin at Castlebank@uphs.upenn.edu.
Have questions? Please contact: Bridget Austin at Castlebank@uphs.upenn.edu, (267) 586-9977
If you would like a Spanish consent form please email us at firstname.lastname@example.org
For Family Members
We are currently planning a research study to identify potential genetic markers of idiopathic multicentric Castleman disease. For this project, we are seeking blood samples from both patients and their immediate family members. The CDCN can’t perform research without the generous sample donations from our patients and their loved ones.
We would like to invite biological parents and siblings of our iMCD patients to enroll in CastleBank to help further this study. For this study, we are asking for 1 tube of blood each from both parents. Biological siblings are helpful for additional analyses, but not required. Please contact the Biobank Program Manager to start the donation process. Castlebank@uphs.upenn.edu
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 program manager, Bridget Austin, at Castlebank@uphs.upenn.edu or call 267-586-9977