Join the drive to collect 300 samples for life-saving research in 2020!
The CDCN has made incredible progress towards our goal of identifying effective treatments for all Castleman disease patients, including supporting the launch of a clinical trial of sirolimus, but important work remains.
We are partnering with the Broad Institute at Harvard and MIT to perform a large sequencing study of blood from 300 HHV-8-negative/idiopathic multicentric Castleman disease (iMCD) patients!
The CDCN needs every iMCD patient to help by contributing a blood sample and donating medical records to the ACCELERATE registry. All 300 iMCD patient samples must be submitted to the Broad Institute for sequencing by May 31st, 2020. We have made it as easy as possible for you to help. We’ll send you a kit in the mail, which you can take to a nearby Quest Diagnostics lab for the blood draw, all costs are automatically covered for anything involved in sample collection.
This year, there are three opportunities to get us closer to a cure than ever before:
- If you have iMCD and are interested in contributing a blood sample to research, please contact Rozena Rasheed via email, phone, or text to: firstname.lastname@example.org or 267-586-9977.
- For UCD, extensive sequencing of lymph node tissue and studies of mutations recently found in lymph node tissue are currently under investigation, using lymph node tissue contributed to the ACCELERATE registry. For information on this study click here.
- We need every Castleman disease patient to join our ACCELERATE patient registry, especially those iMCD patients that contribute a blood sample to this drive!
- ACCELERATE is a collection of de-identified medical records that are used by researchers and physicians to learn more about Castleman disease and to help find the best treatments for Castleman disease patients. Patients can enroll in 20-30 minutes at www.CDCN.org/ACCELERATE to donate their medical data to the registry.
- The University of Pennsylvania and University of Arkansas for Medical Sciences have recently launched a clinical trial of sirolimus for the treatment of iMCD. Please contact Tracey Sikora at (215) 615-3238 or email CDTrial@PennMedicine.UPenn.edu if you are interested or have any questions.
Patients with the following criteria can qualify for this trial:
- Recruiting ages 18 to 80 years of age
- HHV-8 negative idiopathic multicentric Castleman disease
- Currently in active flare
- Has failed siltuximab or tocilizumab
Feel free to reach out to Mileva Repasky (Mileva@castlemannetwork.org) with any questions!
If you are interested in participating in this drive to find a cure, make sure to complete the below form to have a one on one consultation with one of our team members.
Track our progress!
We have created an Outreach Committee for this really important drive to advance understanding and treatment for our disease! This committee will work together to help advise and execute ways to engage the community to support the Our Samples. Our Data. Our Cures drive.
Thank you to our wonderful Outreach Committee members for helping to drive this campaign forward:
- Laura Incorvia
- Frank & Dina Guarino
- Gary & Stacey Gravina
- Yankee McKinnon
- Ryan Hoke
If you are interested in joining this committee please contact Mileva Repasky at email@example.com