Why should I donate tissue samples? 

Hear from Castleman Warriors Gary Gravina and Dr. David Fajgenbaum about why giving samples to Castleman research is so important!

At the Castleman Disease Collaborative Network (CDCN), we are always considering the next step in research that will bring us closer to a cure. Recently we made another 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. Because Castleman disease is so rare, access to blood or tissue samples from Castleman disease patients is a significant challenge. This biobank will allow a more streamlined research process, and it positions us to help other researchers make accomplishments in the fight against Castleman disease.

We didn’t invent the concept of a biobank. Biobanks have been used to find genetic trends and causes behind many common diseases, including cardiovascular disease and diabetes. They have also paved the way for the identification of genetic risk factors for diseases such as multiple sclerosis and colorectal cancer. Whether the biobank is being used to collect samples broadly, from an entire population, or for a smaller group with a specific rare disease, successful biobanks have several factors in common, foremost among them being a simple rule: the more patients donating samples, the better.

Castlebank will allow patients to contribute previously collected and future blood and lymph node samples for research use. 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. Whereas blood and tissue samples from Castleman patients may have historically been difficult for researchers to procure, we will now provide them provide them from one, centralized location.

If you’re interested in participating—and we hope you are—there are a few simple steps to take. First, be sure to fill out the biobank interest survey, below. Once it’s complete, we will email you a link to complete the online consent forms and an additional enrollment survey. It’s a thorough process, but it is very important that you understand how we will handle your samples, what your role will be after you have donated, and what risks are posed by donating.

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.

If you have additional questions, please email info@castlemannetwork.org or call (215) 349-5713.

  

 

We need your help to keep pushing our research forward. Any blood or tissue donation will be used for our high-impact studies that help us continue to battle this disease! 

If you have any questions, please email info@castlemannetwork.org or call (215) 349-5713.