‘All In’ Movement (AIM) 2021:

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

Results:

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)?

Tier 2 (Top 4-9) Research Questions:

  • Why don’t all iMCD patients respond to anti-IL6 therapy?
  • How long should a patient remain on CD treatment (such as siltuximab or sirolimus)? What are recommendations for treatment spacing? Can doses be spaced further apart or discontinued? Can the route of administration be changed?
  • What biomarkers can be used to predict a high likelihood of treatment response in individual patients?
  • Besides IL-6, what circulating or lymph node cytokines, cytokine receptors, and cell-signaling pathways are involved in Castleman disease? Can these cytokines/pathways be targeted with therapies?
  • What circulating or lymph node cell types are responsible for Castleman disease and/or contributing to key elements of Castleman disease(e.g., IL-6 production, increased mTORC1 activation)?
  • What are the indicators/predictors of iMCD relapse ?

Tier 3 (Top 10-20) Research Questions:

  • What are effective treatment approaches for unresectable UCD?
  • Are somatic (potentially cancer-causing) mutations in circulating immune cells or rare lymph node populations responsible for iMCD?
  • What are the risks of long term CD treatment (ex: malignancies, autoimmune diseases, etc.)? Is there any way of reducing side effects?
  • How can we identify new therapeutic targets and treatment options for anti-IL-6 non-responders?
  • What is the lasting psycho-emotional impact of CD (ex: PTSD-like symptoms)? How can we provide adequate supportive care to CD patients to improve quality of life?
  • Are somatic (potentially cancer-causing) mutations in circulating immune cells or rare lymph node populations responsible for iMCD?
  • What are the specific risks for lymphoma and other associated diseases? Should Castleman patients be screened?
  • Is there an association with having a family history of other autoimmune conditions (diabetes, Hashimoto’s/autoimmune thyroiditis, rheumatoid arthritis, multiple sclerosis (MS), lupus, or myasthenia gravis?
  • Can CD be activated by pregancy-related autoimmune phenomena? What are the effects of CD on pregnancy and risk of miscarriage?
  • Does CD in diagnosed in childhood and adolescence have the same causes and risk factors as CD in adults? How should CD be treated or managed in childhood and adolescence?
  • What are the treatment options for non-recectable UCD in children and young adults?

Phase 3: SAB Review:

The community-prioritized list was shared with the CDCN Scientific Advisory Board.  After the community votes were collected, there was an SAB-specific voting process. SAB members were asked to give a letter grade (A through C) for each idea, grading both on the impact on patient outcomes and feasibility of execution

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 most impactful for CD patients! We have created an anonymous poll in CDCN Connect with a condensed list of the ideas and questions gathered so far. You will be able to vote for the top high-priority ideas between now and April 30th. The community-prioritized list will be shared with the CDCN Scientific Advisory Board to plan studies that answer the unknowns of 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 top ideas that are most meaningful to you!

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 are the most impactful questions that you have about Castleman disease? 

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 before all patients are living full lives. The CDCN’s ‘All in’ Movement 2021 (AIM 2021) will allow us to crowdsource and prioritize questions from the entire Castleman disease community to guide the next generation of research studies on Castleman disease! 

We hope to have 50 or more questions about Castleman disease generated by the Castleman disease community, which the community will vote to prioritize. These 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 questions from patients and loved ones provides new ideas that we may not otherwise have thought about and ensures that our research is closely linked to the concerns and challenges that you face with Castleman disease. 

Crowdsourcing and prioritizing research questions is one of the first steps in the CDCN’s innovative roadmap to accelerate Castleman disease 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. 

To participate: 

    1. Sign up: CDCN Connect is the platform we are using for our crowdsourcing effort, so be sure to sign up if you haven’t already! Sign up for CDCN Connect here.
    2. Ask: Post any questions you have about Castleman disease or any ideas you have for future Castleman disease research to the thread/subcategory titled “Submit your ideas and questions here”. 
    3. Engage: Engage with and comment on the other questions and ideas that have been posted by other members of the CDCN Community.
    4. Vote: 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 most meaningful to you. 

For more information on crowdsourcing, check out this recording of our last patient and loved one Community Gathering.

If you have questions please contact Mileva at mileva@castlemannetwork.org or (610) 304-0696.

Acknowledgments:

We are so thankful to our community of patients, loved ones, physicians, and researchers who contributed to this important crowdsourcing effort:

Dr. Vikram Aggarwal, Jessica Alihodzic, Jeff Beardsley, Dr. Raida Ben Salah, Emmanuel Besa, Vineetha Binoy, Patrick Bowen, LaToya Brown, Dr. Amy Chadburn, Lina Ciccarelli, Penny DeRemer, Dr. Angela Dispenzieri, Dr. David Fajgenbaum, Vladka Folkes, Nicole Fontenot, Michelle Full, Patrick Garber, Sonya Goins, Tim Goodart, Gary Gravina, Amanda Harman, Cathy Hager, Cheryl Jewell, Dr. Kojo-Elenitoba Johnson, Dr. Mitsuhiro Kawano, Ashish Kumar, Dr. Rachelle Kurzrock, Linda Larson, Dr. Mary Jo Lechowicz, Ivana Macak, Laura Mayben, Allison McGarrow, Yankee McKinnon, Brenda Miller, Daniel Mitchell, Gina Moriarty, Norma Nakaima, Dean Price,Mileva Repasky, Paul Robbins, Francis Roof, Dr. Jean-Francois Rossi, Ulrike Rott, Mario Ruch, Dr. Jason Ruth, Stacey Scarburgh, Dr. Steve Schey, Paulo Souza, Deb Sparks, Dr. Gordan Srkalovic, Dr. Matthew Streetly, Eileen Tootle, Nina VanGelder, Dr. Frits van Rhee, Deb Veltman, Steve Zalkin, and Dr. Lu Zhang

Thank you to our amazing CDCN Team:

Dr. David Fajgenbaum, Guillaume Harmange, Ania Korsunska, Alexis Phillips, Ana Belen Oromendia,  Mileva Repasky, and Mary Zuccato

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