‘All In’ Movement (AIM) 2021:

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

Phase 2: Voting

AIM 2021 – VOTING IS OPEN

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
Dr. Raida Ben Salah
Dr. Amy Chadburn
Lina Ciccarelli
Penny DeRemer
Dr. Angela Dispenzieri
Dr. David Fajgenbaum
Nicole Fontenot
Michelle Full
Patrick Garber
Sonya Goins
Gary Gravina
Amanda Harman
Cheryl Jewell
Dr. Kojo-Elenitoba Johnson
Dr. Mitsuhiro Kawano
Ashish Kumar
Dr. Rachelle Kurzrock
Dr. Mary Jo Lechowicz
Ivana Macak
Laura Mayben
Yankee McKinnon
Gina Moriarty
Norma Nakaima
Dean Price
Mileva Repasky
Dr. Jean-Francois Rossi
Ulrike Rott
Dr. Jason Ruth
Stacey Scarburgh
Dr. Steve Schey
Deb Sparks
Dr. Gordan Srkalovic
Nina VanGelder
Dr. Frits van Rhee
Deb Veltman

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