A generous donor has agreed to match all donations up to $200,000. Please help us take advantage of this matching grant between now and December 31, 2021.
Thanks to those participating in HealthTree, together we are changing how myeloma research can be performed - making it faster, more accurate and less expensive for myeloma researchers to perform their work. With over 9,700 participating myeloma patients, the HealthTree platform now has the largest and most comprehensive, cross-facility myeloma patient data set in the world.
In traditional research, a researcher would have to obtain funding, recruit patients, gather patient data through surveys and studies, manually obtain and sort through medical records and then analyze the data. This process takes years and several hundreds of thousands of dollars each time a research question is posed. Because of the difficulty, investigators are typically limited to their own patient data sets at a single facility.
HealthTree reduces the friction, time and expense in performing research, so myeloma investigators can come to faster and more accurate conclusions. We invite the patient community to participate in the platform as a whole. We validate the medical records information, so when a researcher wants to submit a research question, the data is already prepared and ready. Additionally, researchers have never had the opportunity to reach out to living myeloma patients to ask them follow-up survey or study questions. With HealthTree, they can submit their survey and study questions and invite patients to participate. Patients are happy to contribute their answers and experiences to accelerate myeloma research towards a cure.
This is a radically new way to perform myeloma research, making the process faster and less expensive. HealthTree offers new tools to investigators to identify trends, develop new insights and create new hypotheses.
This #GIVINGTUESDAY, we invite you to donate to 4 studies about multiple myeloma that address common patient questions in collaboration with myeloma researchers, facilitated by HealthTree:
Can diet slow the impact of smoldering myeloma progression? We’ll learn the optimal diet for patients with precursor conditions in collaboration with MSKCC researcher Urvi Shah, MD.
Can physical activity prevent smoldering myeloma progression? In this study led by Roswell Park researchers, patients will track their fitness using a personal fitness device.
Which real-world therapies are giving myeloma patients their best outcomes by genetic subgroups? This study, launched in 2020, current includes over 1,000 myeloma patients. We are currently analyzing the different treatment paths by genetic feature and genetic combinations beginning with 4;14 myeloma patients. We will continue to analyze patients with additional genetic features such as the 1q gain, del17p, 14;20 and 11;14 myeloma. We are reviewing the data with globally renown myeloma genomics experts. Join the study here.
How is CAR T therapy affecting myeloma patients in the real world? This will be a three year study beginning in the first part of 2022. We will learn what the experience was like for patients and learn about important information such as expected side effects, caregiver responsibilities and the time of remission by genetics and prior lines of therapy.
In addition to the studies we plan to run above in 2022, we will be issuing calls for proposals in June of 2022 to invite myeloma researchers to submit surveys, studies or research they would like to perform on the HealthTree platform. We will prioritize the submissions and select a key number of studies to perform in 2022 with the help of a Scientific Advisory Board and Patient Advisory Board.
The Myeloma Crowd is pleased to have supported meaningful multiple myeloma research through the Myeloma Crowd Research Initiative (MCRI). The MCRI began as the first crowdfunding effort to support individual multiple myeloma research projects of top myeloma investigators including Cesar Rodriguez, MD of Wake Forest University, David Chung, MD of Memorial Sloan Kettering Cancer Center, Frank Zhan, PhD of the University of Arkansas Medical Sciences, Michael Hudecek, MD of the University of Würzburg and Ivan Borrello, MD of Johns Hopkins Medicine. You can learn more about our prior MCRI funded projects here.
Donors have a unique opportunity in 2021 thanks to the CARES act approved during the COVID situation.
1) Section 2204 of the CARES Act permits eligible individuals who do not itemize deductions to deduct $300 of qualified charitable contributions.
2) Section 2205 states that up to 100% of your adjusted gross income (AGI) of all cash donations can be claimed if you itemize. Formerly, the cap was 60%. This only applies through the end of 2021.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.