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.
The Indiana Myeloma Registry charts new variables of the disease in pursuit of more effective therapies.
As you can see, we’ve found ways to define and describe multiple myeloma, but there's still a lot we don't know about this disease. The questions sound simple, but the answers are complex and elusive:
Multiple myeloma is cancer of the plasma cells.
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:
Participants of all races and backgrounds throughout Indiana are needed.
We’ll mail you a kit!
One time: Online or by phone
Every 3-12 months: Online or by phone
So we can follow how your treatments go without you doing extra work!
No, we can mail a saliva sample kit directly to you and all other study activities can be done online or by telephone.
Efforts will be made to keep your personal information confidential. We cannot guarantee absolute confidentiality. Your personal information may be disclosed if required by law. No information and databases in which results may be stored which could identify you will be shared in publications about this study.
Organizations that may inspect and/or copy your research records for quality assurance and data analysis include groups such as researchers from Indiana University, other universities, government agencies (like the Indiana State Department of Health), or private companies that work on developing new tests or treatments. Any published results from research on your sample will not identify you.
There are other organizations that may access Indiana Myeloma Registry records and your information: the IU Institutional Review Board (or its designees) and state or federal agencies with oversight responsibilities for this research.
Some data may also be provided to a government health research database for broad sharing with researchers around the world, but the data will not contain any information which could identify you.
Information or specimens collected from you for this research may be shared with other researchers in the future. If shared, your information will only be used for the continued study of multiple myeloma and related diseases (monoclonal gammopathy of undetermined significance, smoldering multiple myeloma, amyloidosis, and plasmacytoma). If this happens, we will not share your personal identifiers.
We do not plan to ask your consent before we share this information. Use of your information by other researchers will require review and approval from the Indiana Myeloma Registry Steering Committee and if appropriate, approval by the Institutional Review Board. The Institutional Review Board reviews research proposals to make sure your rights and welfare are protected.
No, not directly. You will still work with your own doctors for your treatment plan. The study may help us find better treatments for multiple myeloma patients that you could benefit from in the future. The study may also help you find clinical trials for which you might be eligible.
No, it's completely free to you.
No, not currently. We are hoping to do this in the future.
No. And there is a law called GINA that makes it illegal for employers or insurance companies to discriminate against you based on your DNA.
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:
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.
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.
Philanthropy is essential to IU Simon Comprehensive Cancer Center’s efforts to find solutions that save lives. Your gifts facilitate research that sets worldwide standards for care, improving outcomes for patients in Indiana and far beyond.
To learn more about how you can support cancer research, review our giving options or contact our development team today.
