Help Us Accelerate the Diagnosis of Myeloma-Related Amyloidosis

You can help us accelerate the diagnosis of myeloma-related amyloidosis! 

This is a study for patients with a multiple myeloma diagnosis and a possible diagnosis, diagnosed, or misdiagnosed amyloidosis diagnosis. 

What is the study about? How long does it take? 

This study aims to measure how long it takes for amyloidosis symptoms to appear before patients get diagnosed. Its purpose is also to see if any delays in an amyloidosis diagnosis are linked to difficulties that amyloidosis patients with multiple myeloma experience when being diagnosed by a healthcare professional. 

This survey has twelve (12) questions and will take about thirteen to fifteen (13-15) minutes to complete. 

What will I be asked to do? 

1. Create a free HealthTree Cure Hub account. 
2. Complete the survey with questions about your amyloidosis symptoms and diagnosis (or misdiagnosis). 
3. You will also have the option to anonymously connect your electronic medical records to the survey, allowing researchers to review your myeloma and amyloidosis history. 

Who can join this study? 

Anyone with unexplained symptoms that might be related to amyloidosis, an amyloidosis diagnosis, or a misdiagnosed amyloidosis with an additional diagnosis of MGUS, smoldering myeloma, and multiple myeloma can participate in this survey. 

Are there any risks or benefits? 

There are no anticipated risks. While there are no monetary or direct benefits for participating, the information collected will contribute to improving amyloidosis diagnosis for patients with multiple myeloma. You can make a difference in the lives of current and future amyloidosis and multiple myeloma patients. 

Can I withdraw from the study if I change my mind? 

Your participation in this study is completely voluntary. You have the right to withdraw at any time without consequence. 

How do I join the study? 

To participate, click the button below to get started. You can also contact our Patient Navigator team by calling/texting +1 800 709 1113 or emailing support@healthtree.org. 

Amyloidosis Survey

Who is conducting this study? 

Dr. Morie Gertz from the Mayo Clinic in Rochester is conducting this survey as the primary investigator. He is joined by several colleagues across the United States, namely: 

• Sascha Tuchman, MD (University of North Carolina at Chapel Hill) 
• Heather J. Landau, MD (Memorial Sloan Kettering Cancer Center) 
• Giada Bianchi, MD (Dana Farber Cancer Institute) 
• James Hoffman, MD (Sylvester Comprehensive Cancer Center) 
• Jeffrey Zonder, MD (Karmanos Cancer Institute) 
• Aman Godara, MD (Huntsman Cancer Institute) 

The HealthTree Research team is also collaborating in this study, led by Jay Hydren, PhD, CSCS, Sr. Director of Clinical Research at HealthTree Foundation. 

If you are interested in participating in other HealthTree Cure Hub surveys and studies for myeloma research, click here: Survey and Studies

Would you like to learn about the research that HealthTree has previously helped conduct for multiple myeloma? Read here: HealthTree for Multiple Myeloma Publications