Each year, the CDCN sets several specific priorities that we hope to achieve in the calendar year. Check out updates on how we did on our 2018 goals and see our priorities for 2019!
1) Patient Engagement
Goal: Support, empower, and educate Patients and Loved Ones
2018 was a great year for supporting patients. We worked hard to create our Patient Toolkit, a booklet that contains extensive and accurate information about Castleman disease that was written specifically for Castleman disease patients and loved ones. In addition, we created a new Patient Support Pathway to help our team keep track of and provide additional support to Castleman disease patients that are in the hospital. Our annual Patient Summit, held in September in Philadelphia, was our best yet and over 90 patients, loved ones, and CDCN team members attended. We continue to answer patient and loved one emails and phone calls every day and constantly do our best to provide the needed support for all people affected by Castleman disease.
In 2019, we will continue to find ways to support and empower patients to make sure that everyone feels supported by the CDCN. We also hope to highlight more patient stories and experiences on our website and social media pages.
Interested in getting a copy of the Patient Toolkit? Email: email@example.com
Want help connecting to resources, getting support, or just need someone to talk to? Call our 24/7 Patient and Loved One support phone: Mileva Repasky: (610) 304-0696
2) Collaborative Research
Goal: Prioritize, facilitate, and execute collaborative research
The CDCN worked hard to facilitate collaborative research and fund research projects in 2018. One huge accomplishment was the publishing of the first-ever treatment guidelines for idiopathic multicentric Castleman disease (iMCD). The guidelines were written via expert consensus from 42 Castleman disease experts across 10 countries and was a true testament to the positive power that collaboration can bring. With diagnostic criteria (2017) and treatment guidelines now published for iMCD, physicians around the world now have the research-based tools to help treat iMCD patients effectively. In addition, we had our highest attendance ever at our annual Working Dinner for physicians and researchers held at the American Society of Hematology conference in San Diego with ~80 attendees. At the working dinner, we discuss the latest research and help guide our research agenda for the upcoming calendar year. Due to all of our combined efforts, there were more research publications in the 2018 calendar year that mention Castleman disease than ever before in history!
In 2019, we will work to set up a new physician discussion platform that can help physicians around the world communicate more readily. We will continue to work with our collaborators to conduct the highest-quality research at the fastest possible speed. We also hope to publish the first-ever treatment guidelines for Unicentric Castleman disease!
Want updates on the progress of all of our research updates? Check out our Research Pipeline for a full listing of CDCN research with a study description and funding status for each study.
3) ACCELERATE Registry and CastleBank (BioBank)
Goal: Enroll 100 new patients in the registry and collect 100 samples for CastleBank
We made our goal for the ACCELERATE registry! In 2018, we were able to enroll 100 new patients into the ACCELERATE Natural History study for Castleman disease patients. This study is designed to collect medical records and patient-reported information about Castleman disease and ultimately strives to have at least 500 patient medical records collected in the first five years. The ACCELERATE registry will allow for physicians and researchers to better understand Castleman disease symptoms, treatments, prognosis, and more through careful analysis of thousands of data points from hundreds of patients.
In 2018, we set the ambitious goal of collecting 100 tissues samples for our CastleBank. Castlebank is a biobank of tissue samples from Castleman disease patients that physicians and researchers can use for high-impact research studies that aim to help understand and cure Castleman disease. Over the course of the year, we were able to collect 61 samples--about 60% of our goal. Even though we did not reach our goal, we are pleased and proud of this progress. We are extremely grateful to all of the Castleman disease patients who have generously donated tissue to our biobank. Each sample is an opportunity for a cure, and we think meticulously about which research projects are worthy of using collected samples for. We know that the decision to donate is not always an easy one, and we want patients who have donated to know that they are helping to fight back against Castleman disease and are contributing to finding treatments and cures. In the words of David Fajgenbaum, Co-Founder of the CDCN and Castleman disease patient who has donated more samples than any other Castleman disease patient, “The cure is in all of us.”
Our goal for 2019 is to collect 100 tissue samples for our CastleBank and enroll at least 100 more patients in the ACCELERATE Natural History study.
Interested in donating tissue samples? Thank you! Learn more here!
Interested in donating medical records for the ACCELERATE Natural History registry? Learn more here!
Are you a patient who is currently experiencing a Castleman disease flare and would like to donate samples for high-impact research? Call: (267) 586-9977
4) Events and Campaigns
Goal: Lead events and campaigns to raise $200K
We exceeded our goal by raising over $220,000 this calendar year! Quest for a Cure, our annual gala, was held at the Arts Ballroom in Philadelphia, PA and $103,000 was raised from this beautiful event. Our Castleman disease Warriors--a nation-wide team of Castleman disease patients and loved ones who are dedicated to raising money and awareness for Castleman disease--met their goal of raising $40,000 in 2018! In addition, World Castleman Disease Day, Giving Tuesday, and personal donations made through our webpage all helped us surpass our fundraising goal in 2018. We are very thankful to all of the people around the world who have helped contribute to our mission of curing Castleman disease. Over 90% of all dollars donated goes directly to Castleman disease research--an unprecedented percentage for any disease-associated nonprofit organization. We will continue to work hard to stretch every dollar to its fullest potential.
Interested in donating to the CDCN? Donate here!
Interested in learning more about Quest for a Cure? Learn more here!
5) Physician Engagement
Goal: Educate the medical community and identify experts for referral
The CDCN continues to spread awareness and knowledge about Castleman disease across the medical community. In 2018, David Fajgenbaum was part of two educational sessions at the American Society of Hematology conference where he spoke to ~2,000 physicians and researchers in the hematology-oncology field about how to diagnose and treat Castleman disease. In addition, David Fajgenbaum re-wrote and edited all of the Castleman disease-related pages on UpToDate. UpToDate is akin to wikipedia or google for physicians and is the premier resource used by physicians around the world to educate themselves about how to best treat each disease. The Castleman disease pages on UpToDate garner over 100 unique visits per day from physicians around the world (30,000+ visits per year) who are trying to learn about and treat Castleman disease. With the diagnostic criteria for iMCD, treatment guidelines for iMCD, and updated UpToDate pages for every subtype of Castleman disease, physicians finally have good tools in their hands for treating Castleman disease patients. In addition, we have continued to expand our physician referral list to help patients find doctors that are knowledgeable about Castleman disease. Over 5,000 emails were sent to physicians during 2018 alone with the diagnostic criteria, treatment guidelines, and information about Castleman disease!
In 2019, we will continue to work hard to educate the medical community about Castleman disease. We plan to hold new Castleman disease-related events at the American Society of Hematology conference in 2019 that directly target the specialist physicians that are most likely to treat Castleman disease patients. We continue to refine and expand our physician referral list and will do our best to help physicians directly who reach out to us for help. We will also create a new physician discussion platform that can help facilitate physician education that will ultimately help patients receive better treatment.
6) Sirolimus Clinical Trial
Goal: Perform the necessary steps to launch the Sirolimus clinical trial
Our goal for 2018 was to be ready to launch the first clinical trial for a medication for Castleman disease in over five years. We’ve met this goal! We are all set to launch a trial on the m-TOR inhibitor, Sirolimus, for patients who have not benefited from anti-IL-6 therapy (siltuximab, tocilizumab) in 2019. We were able to secure funding from the National Institute of Health (NIH) to launch this trial, and we expect to be ready to open the trial in 2019!
Our 2019 goal is to launch the Sirolimus trial in Summer 2019. The trial will likely encompass 15-20 patients that will be able to enroll at the University of Pennsylvania or at the University of Arkansas for Medical Sciences. We are excited to take this new major step in potentially finding a new medication to treat Castleman disease!
7) Individual and Corporate Partners
Goal: Support major donors and partners to raise $200K
This new, small program to seek out and support individual and corporate partners exceeded its goal by 50%! $300,000 was raised for the CDCN by four corporate partners and individuals. In addition, Medidata partnered with the CDCN and has provided pro bono data analysis and work for Castleman disease research!
In 2019, we will continue to deepen and expand these relationships and will work together with our partners to continue support for the CDCN!
Goal: Leverage communications outlets to achieve 2019 goals
2018 was a great year for communications. We were able to leverage our communication outlets effectively to achieve almost all of our goals that we set out for ourselves in 2018!
In 2019, we hope to continue to expand and build our communications methods. We plan to revamp our website to maximize the usability and value of our website for patients, physicians, and members of the general community. We also plan to increase the use of and grow our many social media platforms to help spread information about Castleman disease and the CDCN.
Follow us on social media for educational content and knowledge about all of the happenings at the CDCN!
Interested in helping with our social media in 2019? Email: firstname.lastname@example.org
9) Talent and Volunteer Planning
Goal: Recruit and retain top talent/volunteers
The CDCN has continued to retain and rely heavily on the hard work of volunteers in Philadelphia and across the country to support the mission of the CDCN. Volunteers have allowed the CDCN to use over 90% of all dollars donated for Castleman disease research, and are the reason why the CDCN is able to exist and grow as it has for the past 6 years. Volunteers--we thank you for all of your incredibly hard work for the CDCN and for continuing to support and build the CDCN.
Interested in helping out the CDCN? We are always looking for hardworking and committed volunteers to help the CDCN. Email: email@example.com
10) Expanding the CDCN's approach to other rare diseases
The Castleman Disease Collaborative Network (CDCN) is excited to announce that we're partnering with the Chan Zuckerberg Initiative (CZI) to accelerate Castleman disease research and revolutionize rare disease research. CZI approached the CDCN after being extremely impressed by the approach the CDCN has taken in accelerating research, supporting patients, and finding treatments for Castleman disease. In this partnership, the CDCN will strengthen and expand the tools we use to support patients and physicians and advance research. We are extremely excited about this work in 2019 and to have such a strong partner so that we can help build our infrastructure and collaboration platforms for the future.
We want to assure patients and our community that the CDCN’s mission will continue to have Castleman disease as our #1 priority. All of our research will continue to be for Castleman disease and your donations will continue to support Castleman disease endeavours. Though the mission of this project is ultimately to fine-tune a strategy and plan that other rare diseases can use to support themselves, we believe that this partnership will strengthen what we’re doing for Castleman disease in the process. We promise to not lose sight of Castleman disease and Castleman disease patients. We know that thousands of patients and loved ones are counting on us and we will not let our Castleman community down.