Hoosiers with multiple myeloma can provide important data to researchers at Indiana University Melvin and Bren Simon Comprehensive Cancer Center who are searching for a cure. The Indiana Myeloma Registry is seeking participants throughout Indiana.
Multiple myeloma is a cancer of white blood cells called plasma cells. While it’s a relatively uncommon cancer, it’s a devastating diagnosis. An estimated 670 Hoosiers will be diagnosed with myeloma this year and 260 will die from this blood cancer.
“Myeloma is a very heterogeneous disease, meaning every patient story is unique to them—the way the disease presents itself, the way it affects them, and the way they respond to the treatment,” said Mohammad Abu Zaid, MD, a physician-scientist who helped launch the registry at IU before moving on to NYU Langone Health. “It makes my clinic very interesting because it's never the same story.”
With the Indiana Myeloma Registry, researchers believe they can learn from each of those stories to gain a better understanding of multiple myeloma. The cancer takes many years to develop and goes through stages before it may be diagnosed. Because of this, the cancer cells are not only different from patient to patient, but also within a person.
The registry allows patients with myeloma and precursor conditions to provide their medical history, treatment data and a saliva sample to researchers who will use the collective data to better understand the cancer.
“With the Indiana Myeloma Registry, we're trying to write the story for each patient with myeloma from the time of their diagnosis and all through their treatments in real-time, so that we are capturing accurate data and all the data points that we believe are important,” Abu Zaid said. “We can then use all of that information to answer some of the most important questions in myeloma with the goal of finding a cure for myeloma.”
The Indiana Myeloma Registry opened in 2018, and more than 500 patients treated at IU Health have joined so far. Now the registry is open to patients throughout the state, so researchers gather more myeloma patient journeys to better understand who is most likely to develop multiple myeloma, what treatment works best for which people and what causes the blood cancer.
“We're trying to get every patient with myeloma to join this study so we can track more and more patients and include all Hoosiers with myeloma in the registry,” he said.
Participants in the study provide a saliva sample via mail, complete health history and quality of life questionnaires, and allow researchers to collect medical records data to track information such as treatment and lab tests. Saliva samples will be used to extract DNA to learn if patients have inherited risk factors for myeloma or increased risks for side effects from treatment. Patients at IU can also donate blood and bone marrow samples to the registry.
Patient data collected by the registry will be used by myeloma researchers at the cancer center such as Rafat Abonour, MD, Brian Walker, PhD, Fabiana Perna, MD, and others.
Researchers know men are more likely to get myeloma and that Black men and women are twice as likely to develop the disease. Researchers are working with The Polis Center at IUPUI to examine registry data to identify and understand other risk factors for myeloma, such as environmental or medical history.
The Indiana Myeloma Registry is also partnering with Indianapolis-based software development company LifeOmic. The company is building a platform where clinical data, surveys, biospecimens, and genetic data can all be visualized for researchers.
Abu Zaid said he has been humbled by how willing patients are to join the registry, knowing it may not change their treatment, but could help others who will be diagnosed with myeloma. He hopes others throughout the state will join.
“It's a great opportunity for myeloma patients to participate and be part of finding the cure for myeloma,” Abu Zaid said.
Participants of all races and backgrounds throughout Indiana are needed. To learn more and enroll, visit: www.cancer.iu.edu/myelomaregistry/. If you have questions about the study, email myeloma@iu.edu or call 317-278-0808.
The Indiana Myeloma Registry is funded in part by support from the Indiana University Precision Health Initiative, Miles for Myeloma, the Harry and Edith Gladstein Chair and the Omar Barham Fighting Cancer Fund.
