We believe that patients are the key to a faster cure for multiple myeloma!
While significant research and development is being done in multiple myeloma, the research process is woefully slow. For patients who feel like they are playing "beat the clock" with this disease, every day, month and year matters.
Today, researchers have to undergo a painstaking process to run clinical trials - even "observational" studies that are just inviting patients to share their experiences.
To construct a study, they must write a protocol, find funding (a hard part), get Institutional Review Board approval, recruit patients to join (the hardest part), conduct the study and analyze the results.
What if we could shorten that process by years and hundreds of thousands of dollars?
HealthTree gives patients a unique opportunity to Accelerate Myeloma Research when we participate in surveys and studies created by myeloma specialists.
Myeloma specialists can submit their survey questions to HealthTree. We then post them on the www.healthtree.org website. Over 1800 of you have answered the current survey questions in HealthTree. Thank you!
After the questions are answered, we then provide the answers back to the researchers quickly and for FREE.
Dr. Michael Thompson, from Aurora Health Care, recently praised the speed and number of patient responses he received to survey questions he submitted in HealthTree.
"What would take years to accomplish through old, traditional methods takes only a couple months through HealthTree (and it was free)."
How fast could myeloma specialists come to better conclusions if we collectively answered simple questions such as: Were you vaccinated post transplant? Have you received an MRD test? Do you have family members with myeloma?
The questions take just seconds to answer and our responses are incredibly valuable to the research community.
Normally, it would take several years and hundreds of thousands of dollars to gather this information if they were to run a typical clinical trial. But we can help the research community answer these questions quickly and for free.
We are also beginning to run formal IRB-approved observational studies inside of HealthTree. Our first study is to identify correlations between psoriasis and multiple myeloma. We found that 6% of myeloma patients using HealthTree had both diseases.
Dr. Wilson Liao, a psoriasis genomics expert from UCSF Health leading the study, enthusiastically told us that through HealthTree, he was able to perform the world’s largest psoriasis/myeloma study. We provided him the ability to ask psoriasis-specific questions for patients who have both diseases and correlate those answers with their anonymized HealthTree profile.
We are just getting started. We have plans for several exciting studies this year using the HealthTree platform.
HealthTree is an amazing hypothesis generation tool." - Myeloma specialist Sandy Wong, MD of UCSF
If you would like to speed up a myeloma cure, join Healthtree (www.healthtree.org) and go to the Accelerate Myeloma Research section to quickly answer the current survey questions.
If a myeloma researcher both treats patients and performs academic research, they can submit surveys and studies in HealthTree at no cost. We do not charge them a fee to use the platform because our goal is a faster myeloma cure!
Unlike many studies that patients join, survey and study participants will also see the aggregated, anonymized report information once the survey or studies are complete. If you contribute, you get the results.
We invite you to join HealthTree today and become part of a myeloma cure!
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.