Donating samples for Research

The international community of Castleman disease researchers need samples from Castleman disease patients so that we can continue to drive forward our search for a cure for this disease. Obtaining tissue samples from patients will help us better characterize this disease, as well as lead to greater knowledge about current and potential treatments. The international research community can't do research without samples, so we need your help to obtain these samples! If you haven't yet, please also consider joining the first ever Castleman disease natural history registry (ACCELERATE) here: http://www.cdcn.org/accelerate

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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!

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

If you have any questions, please e-mail info@castlemannetwork.org.

 

Donating blood or tissue samples to the CDCN biobank is a great way to help us move research forward.

Initial enrollment:

First, be sure to fill out the Biobank interest survey. You will subsequently be e-mailed a link to complete the online consent and additional enrollment survey questions. 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.

We will ask you about:

 Family


Your family history
 Doctor



Your diagnosis
 Disease history

The progression of your disease, including any flare ups you may have had since you were diagnosed
 Checklist


Your symptoms

 

Pdf



PDF copies of your health records, if you can provide them

The survey will also provide us all the information we need to ensure your samples are easily tracked while also protecting your identity. Once you have finished the survey, we will review your information and make sure we have everything we need to proceed. 

Drawing your samples:

 

Package


We will send you a kit with two sets of tubes and instructions for how to fill them

 

blood vial 

One set of the tubes is meant for your next scheduled draw


The other set is to be filled in the event you have a flare up of your disease—if you get sick again after a period of remission

Once the tubes are filled, whether at your scheduled draw or during a flare up, the tubes should be FedExed back to us on the same day they are filled. We will provide the packaging and postage for this. When we receive your samples, your job is done! We will let you know that we received your samples, and we will keep you up to date with the research projects being conducted as a result of the biobank.