Indiana Myeloma Registry

We need your unique cancer story for the Indiana Myeloma Registry

Every patient with multiple myeloma has a unique cancer story—the way the disease presents itself, the way it affects them, and the way they respond to the treatment. It’s what makes this disease so difficult to treat.

If you’re a Hoosier with multiple myeloma, your unique story could be the key to finding a cure. Read more on the tracing of the story of myeloma.

The Indiana Myeloma Registry is a statewide study that gathers patients’ health history from the time of diagnosis and through treatments in real-time. Data scientists will continually analyze all that information to answer questions that keep oncologists—and patients—awake at night.

Take a look to find out how the study works and who’s eligible to participate. With your help, we’re going to improve treatment and, one day, find a cure.

Register Today 

Tracing the Story of Myeloma

The Indiana Myeloma Registry charts new variables of the disease in pursuit of more effective therapies.

Read More

What causes cancer?

Each cell in your body holds a copy of your DNA. This DNA tells your cells how to do their jobs, like when to copy themselves and when to delete. Your cells copy and delete all the time. This is normal and healthy.
Sometimes during the copying process, a mutation (like a typo) happens in the DNA that your body can't correct. Your cells may begin losing their ability to do their normal jobs, copying too often, and taking up too much space. This is cancer.

What is multiple myeloma?

Multiple myeloma is cancer of the plasma cells.

Plasma cells are a type of white blood cell that help fight infections by making antibodies. They are created in the bone marrow.
As the mutated plasma cells grow out of control, they take over the bone marrow, leaving less space for red blood cells. This leads to a condition called anemia, which is when the blood doesn't have enough red blood cells. Red blood cells carry oxygen through the body. Without enough red blood cells, the body can't get enough oxygen.
The mutated plasma cells also may take over the bone, causing pain and bone fractures. As the bone breaks down, calcium leaks into the blood. High calcium in the blood is called hypercalcemia.
Mutated plasma cells make an abnormal antibody called M-protein (monoclonal protein), which can cause blockages in the kidneys. This can lead to kidney dysfunction and failure.
Multiple myeloma happens over time, usually several years. At the early stages, it is called MGUS—monoclonal gammopathy of undetermined significance.
As more and more plasma cells get mutations, it develops into a stage called smoldering myeloma.
Active multiple myeloma is diagnosed when one or more of the main symptoms (called CRAB symptoms) start to develop. These symptoms are hypercalcemia, renal (kidney) dysfunction, anemia, and bone disease.

Who’s eligible to participate?

You’re eligible if these things are true about you:

You are a male or female patient age 18 or older at the time of informed consent

—AND—

You have been diagnosed with or are suspected to have one of the following:

  • Monoclonal gammopathy of undetermined significance (MGUS)
  • Smoldering multiple myeloma
  • Multiple myeloma
  • Bony or soft tissue plasmacytoma
  • Primary amyloidosis
  • Plasma cell leukemia
  • Other plasma cell dyscrasias (including but not limited to light chain deposition disease, monoclonal gammopathy of renal significance, POEMS syndrome)

Participants of all races and backgrounds throughout Indiana are needed.

How does the study work?

Saliva sample

We’ll mail you a kit!

Health history questionnaire

One time: Online or by phone

Quality of life questionnaire

Every 3-12 months: Online or by phone

Access to your medical record

So we can follow how your treatments go without you doing extra work!

It’s that easy—ready to get started?

If you have more questions, just give us a call at 317-278-0808 or email myeloma@iu.edu. If we’ve answered all your questions, use the link below to get started:

Start Your Initial Screening

The Indiana Myeloma Registry is funded in part by support from the IU Precision Health Initiative, Miles for Myeloma, and the Harry and Edith Gladstein Chair.

Clinical trial details

The official study record for NCT03616483: The Indiana Myeloma Registry is available at ClinicalTrials.gov.

Simon Says Expert Series

Our monthly video series brings together cancer center researchers and physicians, patient advocates, and others to talk about various cancer-related topics.

We’ve covered “chemobrain,” fear of cancer recurrence, health disparities, exercise and physical therapy, the emerging field of supportive oncology, and more.

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