The Indiana Myeloma Registry

Rafat Abonour, MD

Primary Investigator

Recruiting

18-100 years

All

Phase N/A

2500 participants needed

1 Location

Brief description of study

WHAT IS CANCER?

WHAT IS MULTIPLE MYELOMA?

WHAT IS THE STUDY ABOUT?

What is 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.

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.

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.

There's still a lot we don't know about Multiple Myeloma. That's why research is so important.

The Indiana Myeloma Registry is a study to better understand:

Who is most likely to get Multiple Myeloma?
What treatments work for which people?
What causes Multiple Myeloma?

We hope to improve treatment and, one day, find a cure.

If you have Multiple Myeloma, MGUS, Smoldering Myeloma, or other plasma cell disorder, please consider joining the study.

Study Parts

SALIVA SAMPLE	HEALTH HISTORY QUESTIONNAIRE	QUALITY OF LIFE QUESTIONNAIRE	APPROVAL TO LINK TO YOUR MEDICAL RECORD

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!

Study Eligibility

You are 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
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)

you have questions about the study, email myeloma@iu.edu or call 317.278.0808.

Detailed description of study

Frequently Asked Questions:

1. Do I have to come to IU/Indianapolis to do the study?

No, we can mail a saliva sample kit directly to you and all other study activities can be done online or by telephone.

2. How is the data secured?

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.

3. Is DNA shared with anyone else?
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 usedhe continued study of multiple myeloma and related diseases (monoclonal gammopathy of undetermined significance, smoldering multipleyeloma, 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.

4. Will the study change my treatment?
No,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. Theudy may also help you find clinical trials that you might be eligible.

5. Does the study cost anything?
No, it's completely free for you.

6. Will I get results of my DNA analysis?
No, not currently. We are hoping to do this in the future.

7. Will my employer or my insurance company see my study information?
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.

Eligibility of study

You may be eligible for this study if you meet the following criteria:

Conditions: POEMS Syndrome,Plasma Cell Leukemia,Plasma Cell Dyscrasias,Amyloidosis,Monoclonal Gammopathy of Undeterminded Significance,MGUS,Plasmacytoma,Multiple Myeloma,myeloma,mileloma,cancer,
Age: Between 18 Years - 100 Years
Gender: All

Inclusion Criteria

Has been diagnosed with or is 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)

Updated on 28 Sep 2024. Study ID: 1804208190 (IUSCC-0661)

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