The CDCN has made significant contributions to the ways doctors and researchers fundamentally think about CD. In the last four years, we have taken on three different phases to transform CD research:
PHASE 1 - BUILD A COMMUNITY FOR COLLABORATION (COMPLETE)
- Connected an international community of 400+ physicians and researchers through the four largest-ever Castleman disease research meetings and an online discussion board,
- Assembled a Scientific Advisory Board of 28 experts from eight countries,
- Connected over 6,000 patients and loved ones through our online portal in 2015, and
- Engaged patients on the Scientific Advisory Board, Leadership Team, and all research meetings, as well as through a patient summit, online discussion board, physician referrals, and educational materials.
PHASE 2 - ESTABLISH CURRENT STATE OF RESEARCH AND PRIORITIZE FUTURE RESEARCH (COMPLETE)
- Established the current state of medical knowledge for CD and flipped the previous model for how research and physicians believe Castleman disease on its head through an article published in the top hematology journal, Blood.
- Worked with the research community to determine high-priority research projects for the International Research Agenda (IRA).
- Successfully established a unique ICD-10 code for Castleman disease that was launched in October 2016.
- Convened an international symposium to establish the first-ever diagnostic criteria for HHV-8-negative multicentric Castleman disease, which was published in hematology journal, Blood, in January 2017.
PHASE 3 - FUNDED & EXECUTED RESEARCH (ONGOING)
- Engaging patients and loved ones to fight back against CD by raising money and awareness for research through the Castleman Warrior program and contributing blood and other tissue samples for research. Over 200 guests attended our 2015 Quest for a Cure Gala in Philadelphia, PA! The 2nd Annual Quest for a Cure Gala hosted 300 guests!
- Building a global patient registry for CD through a major collaborative partnership.
- Engaging leading experts to conduct the high-priority projects in the IRA.
Invested $190,000 into high-impact research studies in 2015 and $1,443,000 in 2016! Click here for more info. Donate here to help fund research studies in 2017!
More research is critical. Everyone plays an important role, and we need all hands on deck. The CDCN is here to find answers while we work simultaneously to support patients and loved ones affected by CD. Click here for more information on how to get involved.
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