All In Movement Project
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) allowed us to crowdsource and prioritize questions from the entire Castleman disease community to guide the next generation of research studies on Castleman disease.
The goal of this project was to generate a list of high priority studies to focus research efforts. Our aim was to have at least 50 questions about Castleman disease generated by the Castleman disease community, which the community would then vote to prioritize. The submitted questions would then be reviewed by the CDCN Scientific Advisory Board to plan studies that answer the unknowns of Castleman disease. These prioritized studies would then have funds raised and researchers identified for execution.
Phases:
The All In Movement (AIM 2021) is the CDCN’s initiative to gather and prioritize questions about CD and its impact on patients from the CDCN community to drive the next generation of high-impact studies. There are seven phases of this initiative, five key phases for our community to engage in: Launch, Idea Submission, Data Analysis, Voting, Data Analysis, SAB Review and Research Execution.
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)?
If you have questions about this project or its results, please contact Mileva Repasky: mileva@castlemannetwork.org