‘All In’ Movement (AIM) 2021:

The entire community joining together to end Castleman disease by contributing our ideas


There was strong community participation, with 48 individuals participating in both the idea submission and voting stage. A total of 155 ideas/questions were submitted. Our team grouped the 155 ideas/questions into 10 broad research categories and 69 condensed ideas/questions. In the voting phase, 48 individuals participated, casting a total of 1086 votes.

Tier 1 (Top 3) Research Questions:

  • Is JAK inhibition an effective treatment for iMCD patients refractory to siltuximab and sirolimus?
  • What treatment options are available for patients who have a failed or incomplete response to anti-IL6 therapy?
  • What biomarkers can be used to improve diagnosis and tracking (preventing relapse) of iMCD (ex: sFLT-1)?

Phase 2: Voting


Vote for the most impactful ideas to drive Castleman disease research forward! 

Thank you to those of you who have submitted Castleman disease research questions and ideas as part of the CDCN’s All in Movement (AIM) 2021. We have received a total of 155 ideas from CD patients, loved ones, physicians, and researchers and we are excited to proceed to the next phase of this important process.

Now it’s time to vote for the questions and ideas that are the highest priority for CD patients! We have posted an anonymous poll in CDCN Connect with the ideas gathered so far. Once these ideas are prioritized by the community, they will be shared with the CDCN Scientific Advisory Board to plan studies that answer the unknowns of Castleman disease. This is our chance to have a voice in our fight against Castleman disease.

To vote: 

  1. Sign up: CDCN Connect is the platform we are using for voting, so be sure to sign up here, if you haven’t already!

  2. Vote: Visit the voting thread and vote for the ideas that you believe will have the greatest impact for Castleman disease patients.

For more information on crowdsourcing and how to vote, check out the how-to-recording from our Chief Patient Officer, Mileva Repasky.

Phase 1: Crowdsourcing Ideas

What questions would be most impactful to patients if they were answered through research? What studies can help to answer these questions? 

The Castleman Disease Collaborative Network (CDCN) has made great strides in increasing understanding of the unknowns of Castleman disease. However, there is still so much progress to be made. The CDCN’s “All in Movement” 2021 (AIM 2021) will allow us to crowdsource and prioritize questions from the CD community to guide the next generation of studies on CD in an international research agenda. 

We hope to have 50 or more questions or research ideas about Castleman disease generated by the Castleman disease community, which the community will vote to prioritize. Your ideas will be forwarded to the CDCN Scientific Advisory Board to plan studies that answer the unknowns of Castleman disease. 

Why are we crowdsourcing questions? 

We need your unique perspective! Crowdsourcing and prioritizing research questions is one of the first steps in the CDCN’s innovative roadmap to accelerate CD research and treatment discovery. All of the ideas from the high-impact studies the CDCN has done so far have come directly from community input.

We have summarized the current status of CD research as a starting point, but you do not need to review this summary to participate in AIM 2021.

To participate: 

  1. Ask: There are a few ways you can submit your ideas for AIM 2021. 
    1. CDCN Connect (preferred): Log in to CDCN Connect and post to the thread/subcategory titled “Submit Your Ideas & Questions Here.” Posting in CDCN Connect will allow you to see and comment on the ideas that have already been posted. If you have not yet signed up for CDCN Connect, you can do so here
    2. Email to CDCN Connect: You can post to CDCN Connect via email by replying to AIM2021. 
    3. Email us directly: You can also send us your idea by emailing info@castlemannetwork.org. We will post your idea to CDCN Connect on your behalf.
  2. Engage (CDCN Connect only): Comment on the questions and ideas that have been posted by other members of the CDCN community. 
  3. Vote (CDCN Connect only): Once we compile your research questions and ideas in a single list, you will be able to log back into CDCN Connect a few weeks later to vote for the ideas that are the highest priority for CD patients. 

If you have questions please contact Mileva Repasky: mileva@castlemannetwork.org

Arrow Shape Facebook Instagram Twitter Youtube Play Arrow Left