By Jennifer Ahlstrom | Posted - Apr 16th, 2020

 

 

 

 

Myeloma Crowd Introduces Largest COVID-19 Multiple Myeloma Patient Study

The Myeloma Crowd is opening the largest COVID-19 multiple myeloma patient study. Myeloma patients can make a valuable contribution to fighting COVID-19 and receive a free antibody test. We can join together to quickly answer critical questions to help us get through the COVID-19 crisis and come out stronger, healthier and more knowledgeable in the process. 

Why a COVID-19 / Multiple Myeloma Patient Study?

The general information we have today about COVID-19 is limited. Data on the virus's impact on myeloma patients is even more scarce. Instead of listening to anecdotal experiences or rumors, let's contribute our individual experience and use real data to drive our future decisions. 

We can answer key questions such as:  

  • Is my myeloma treatment making my risk for COVID-19 worse?
  • Is my myeloma therapy protecting me against COVID-19?
  • Did my myeloma treatment change because of COVID-19? 
  • If I skip, delay or change treatment, how is that impacting my outcomes?
  • How many myeloma patients actually contracted COVID-19?
  • How severe were their symptoms?
  • What treatment worked best for a COVID-19 diagnosis for myeloma patients?
  • How is COVID-19 affecting me financially? Emotionally?
  • Is my blood type or ethnicity increasing my risk for COVID-19?
  • And answers to over 50 more questions.

What is the COVID-19 Myeloma Patient Study?

The COVID-19 Myeloma Patient Study is a series of questions that have been created by our Multiple Myeloma Research Review Board. These myeloma experts and the Myeloma Crowd want to know how COVID-19 is affecting myeloma patients.

We have created this study inside the HealthTree platform, which has over 5,300 registered myeloma patients and is a timely and comprehensive tool for such a study. Patients are invited to create a HealthTree profile and then answer the study questions. 

The anonymous answers will be aggregated and analyzed by myeloma researchers to identify recommendations that will help all myeloma patients know how best be protected and effectively treated for both COVID-19 and their myeloma. Our goal is to include 1,000 myeloma and precursor condition patients and to provide reporting results quickly.

Who Can Join the COVID-19 / Multiple Myeloma Patient Study? 

All multiple myeloma patients and precursor condition patients (MGUS and SMM) are invited to join. You can join the study if you are COVID-19 positive or negative. Our goal is to include 1000 patients in the study. 

How Do I Join the Study?

  1. Visit www.healthtree.org
  2. Create a HealthTree Profile
  3. Click Accelerate Myeloma Research
  4. Click Multiple Myeloma and COVID-19/Join Study

HealthTree is a tool that helps you navigate your myeloma AND enables this type of rapid research to develop new, faster hypotheses. You will find additional benefits in using HealthTree beyond the study as it was created to help myeloma patients navigate their disease while simultaneously accelerating myeloma research. 

 

Join the COVID-19 Myeloma Patient Study

 

Multiple Myeloma Researcher Study Review Board

This study has been jointly created and reviewed by the following multiple myeloma researchers: 

  • Rafael Fonseca, MD, Mayo Clinic
  • Faith Davies, MD, NYU Langone
  • Ivan Borrello, MD, Johns Hopkins
  • Ola Landgren, MD, PhD, Memorial Sloan Kettering Cancer Center
  • Caitlin Costello, MD, UCSD
  • Mike Thompson, MD, PhD, Aurora Healthcare

Donate to the Myeloma Crowd Research Initiative (MCRI) COVID-19 Study 

Your donations to this Myeloma Crowd Research Initiative project are welcome. Donations will help us provide free kits to study participants, administer the study, and analyze/share the study results with participants.  Donations at specific levels will be provided with a study "Stronger Together" T-shirt (mens and womens sizes available). 

 

Donate to the COVID-19 Myeloma Patient Study

 

 

The Myeloma Crowd Research Initiative is a crowdsourcing method of funding important myeloma research. The first Myeloma Crowd Research Initiative (MCRI) successfully raised $500,000 for two immunotherapy research projects for high-risk myeloma (CAR T and T cell treatments). The second MCRI campaign raised $250,000 for personalized myeloma therapies. Now we invite you to donate to this important project that will provide new insights in the relationship between COVID-19 and myeloma. Help us identify the best possible protective therapies against COVID-19 for myeloma patients by donating to the MCRI today.

 
Jennifer Ahlstrom
About the Author

Jennifer Ahlstrom - Jenny A - Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio, HealthTree and the CrowdCare Foundation.

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