Multiple Myeloma Research Foundation to Donate Data to NCI’s Genomic Data Commons



The National Cancer Institute (NCI) recently announced a collaboration with the Multiple Myeloma Research Foundation to incorporate the Foundation’s wealth of genomic and clinical data about the disease into the NCI Genomic Data Commons. NCI’s Genomic Data Commons is a publicly available database that promotes the sharing of genomic and clinical data among researchers and facilitates precision medicine in oncology.

Large amounts of genomic data about multiple myeloma and other cancers have not been readily accessible to the research community. At a meeting in Boston late this past month, the “Health Care Forum: War on Cancer,” hosted by The Economist, leaders in the health-care field discussed the benefits of this new partnership.

An Invaluable Resource


Combining genomic and clinical information will create an invaluable resource for all researchers worldwide studying this disease who are working toward more effective treatments.
— Douglas Lowy, MD

“Data sharing is essential to advancing cancer research, and I cannot overstate the value of the data that the [Multiple Myeloma Research Foundation] is providing—not only genomic data but also full clinical data as well,” said Douglas Lowy, MD, NCI Acting Director. “Combining genomic and clinical information will create an invaluable resource for all researchers worldwide studying this disease who are working toward new, more effective treatments.”

“The [Multiple Myeloma Research Foundation] is a research and advocacy organization conducting clinical studies that incorporate whole-genome, whole-exome, and RNA sequencing into their study analyses,” said Louis Staudt, MD, PhD, Director of NCI’s Center for Cancer Genomics. “The [Genomic Data Commons] gains power with each new submission, and the contribution of data [from the Multiple Myeloma Research Foundation] will enable the discovery of potentially actionable and life-changing insights into multiple myeloma and its response to therapy that could be used by cancer researchers, doctors, and patients.”

Patient Information Is De-identified

The Multiple Myeloma Research Foundation is the first nonprofit to donate information to the Genomic Data Commons, which will include data on more than 30,000 patients who have many other types of cancers by the end of the year.


The contribution of data [from the Multiple Myeloma Research Foundation] will enable the discovery of potentially actionable and life-changing insights into multiple myeloma....
— Louis Staudt, MD, PhD

Launched earlier this year, the Genomic Data Commons allows researchers to submit genetic and clinical data, such as cancer imaging and histologic data, and integrate these data with information on the molecular profiles of tumors as well as treatment responses. Importantly, all patient information in the Genomic Data Commons has been de-identified. Personal information, such as addresses, social security numbers, and other possible identifiers, is not present; only crucial genetic data and key demographic information are available.

Ongoing Genomic Studies

An important contribution to the Genomic Data Commons will be information from the Foundation’s newest genomic study, “Relating Clinical Outcomes in Multiple Myeloma to Personal Assessment of Genetic Profile” (CoMMpass, NCT01454297). The CoMMpass trial has enrolled more than 1,150 patients to date and is currently the largest genomic and clinical study of this disease. African Americans represent about 18% of the patients enrolled in the CoMMpass trial, based on an interim analysis. The participation of African Americans in this study is significant given that multiple myeloma occurs about twice as often in African Americans as in whites.

Over the next 8 years or longer, patients in the CoMMpass trial will undergo a repeat biopsy and a new genomic analysis at each 6-month checkup and/or at disease progression. Tumor samples are being collected and analyzed when possible at the time of any relapse. The genomic data from these analyses will be immediately deposited in the Genomic Data Commons, with an anticipated sample size of nearly 1,000 cases by the spring of 2017. New data will be deposited at least every 6 months.

The Multiple Myeloma Research Foundation will also share data from the 204-patient study “Towards a Genomic Understanding of Myeloma,” also known as the Multiple Myeloma Research Foundation Multiple Myeloma Genomics Initiative. Through this initiative, whole-genome sequencing of the myeloma genome was completed for the first time.

“[Genomic Data Commons] visualization tools and browsing capabilities will make the [Multiple Myeloma Research Foundation] myeloma data more accessible and could help jumpstart research into this cancer,” said Dr. Staudt.

The Genomic Data Commons is a core component of the Cancer Moonshot and the President’s Precision Medicine Initiative, and it benefits from $70 million allocated to the NCI to lead efforts in cancer genomics as part of the initiative. ■



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