Skip to content Skip to navigation

Multiple Myeloma Research Foundation Contributes to Genomic Data Commons

September 28, 2016
by David Raths
| Reprints
National Cancer Institute commons to include data on more than 30,000 patients by the end of 2016

The National Cancer Institute (NCI) announced Sept 28 that the Multiple Myeloma Research Foundation has become the first nonprofit organization to donate genomic and clinical data to NCI’s Genomic Data Commons (GDC).

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

It is a publicly available database that promotes the sharing of genomic and clinical data among researchers and facilitates precision medicine in oncology. It will include data on more than 30,000 patients who have many types of cancers by the end of the year. Multiple myeloma is the second most common blood cancer, but large amounts of genomic data about this disease and other cancers have not been readily accessible to the research community.

At a Sept. 28 Boston meeting, the Health Care Forum: War on Cancer, Doug Lowy, M.D., NCI’s acting director, said, “Data sharing is essential to advancing cancer research, and I cannot overstate the value of the data that MMRF is providing — not only genomic data but also full clinical data as well. 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.”

Louis Staudt, M.D., Ph.D., director of NCI's Center for Cancer Genomics, said, “The MMRF is a research and advocacy organization conducting clinical studies that incorporate whole-genome, whole-exome, and RNA sequencing into their study analyses, The GDC gains power with each new submission, and the contribution of MMRF data 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.”

Launched earlier this year, the GDC allows researchers to submit genetic and clinical data, such as cancer imaging and histological data, and integrate these data with information on the molecular profiles of tumors as well as treatment responses. All patient information in the GDC has been de-identified, NCI said, meaning that personal information, such as addresses, Social Security numbers, and other possible identifiers, are not present — only crucial genetic data and key demographic information are available.

A key contribution to the GDC will be information from MMRF’s newest genomic study, Relating Clinical Outcomes in MM to Personal Assessment of Genetic Profile (CoMMpass). The 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 percent of the patients enrolled in CoMMpass, 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 than in whites.

Over the next eight years or longer, patients in CoMMpass will get a repeat biopsy and a new genomic analysis at each six-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 GDC, with an anticipated sample size of near 1,000 cases by the spring of 2017. New data will be deposited every six months at a minimum.




ONC National Coordinator Gets Live Look at Carequality Data Exchange

Officials from Carequality have stated that there are now more than 150,000 clinicians across 11,000 clinics and 500 hospitals live on its network. These participants are also able to share health data records with one another, regardless of technology vendor.

American Red Cross, Teladoc to Provide Telehealth Services to Disaster Victims

The American Red Cross announced a partnership with Teladoc to deliver remote medical care to communities in the United States that are significantly affected by disasters.

Report: The Business of Cybercrime in Healthcare is Growing

While stolen financial data still has a higher market value than stolen medical records, as financial data can be monetized faster, there are indications that there is ongoing development of a market for stolen medical data, according to an Intel Security McAfee Labs report.

Phishing Attack at Baystate Health Potentially Exposes Data of 13K Patients

A phishing scam at Baystate Health in Springfield, Mass. has potentially exposed the personal data of 13,000 patients, according to a privacy statement from the patient care organization and a report from MassLive.

New Use Cases Driving Growth in Health Data Exchange through Direct

In an update, DirectTrust reported significant growth in Direct exchange of health information and the number of trusted Direct addressed enabled to share personal health information (PHI) in the third quarter of 2016.

Insurers to CBO: Consider Private Insurers’ Data in Evaluations of Telemedicine

Eleven private insurers, including Aetna, Humana and Anthem, are urging the Congressional Budget Office (CBO) to consider the experience of commercial insurers when evaluating the impact of telemedicine coverage in Medicare.