Due to the rarity of Castleman disease (CD), possibly the greatest challenge of conducting systematic research is the procurement of samples. For decades, we gained a lot of knowledge about CD from case reports; however, this non-systematic study design has limitations in conducting hypothesis-driven work.
Thanks to the BioBank and the Natural History Research programs (ACCELERATE), a lot of progress has been made in securing enough samples for research that has offered insights into the pathophysiology of idiopathic Multicentric Castleman disease (iMCD). These discoveries are leading to more hypotheses about pathophysiology and novel therapeutic targets. And to conduct this work, we need more samples and more statistical power.
What type of samples?
The physician/scientists working on cutting-edge CD research need:
- Lymph node tissue.
- At the time of diagnosis is extremely valuable, as there is no confounding from treatment regimens.
- Samples during flare are also very valuable.
- Extraction of lymph node tissue at remission is not clinically recommended unless there are other indications.
- Serum samples
- Serum samples during flares are extremely important. Comparing flare vs remission could provide espeically important insights.
The scientists involved in CD research recognize physicians around the world who help procure the samples. Physicians who are pivotal in obtaining samples for high-impact publications are strongly encouraged to participate in the research projects and to become collaborators for publishable research.
How to Help
- Call or text the CDCN biobank at (267) 586-9977 if you have a patient experiencing flare symptoms that is interested in donating samples.
- The CDCN will work directly with your patient to obtain appropriate consents, mail tubes and shipping materials (if needed), and answer all questions. The CDCN covers all costs associated with sample donation.
- Patients can learn more about donating samples to research here. Patient questions can be directed to info@castlemannetwork.org.