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The Important Role of Patients in Advancing Cancer Care

by PierianDx, on June 17, 2019

Patients are more educated and involved in their cancer care than ever before. And often, this involvement extends beyond a diagnosis and into the philanthropic realm, raising money to fund research for the illness that turned their lives upside down.

Such was the case with Kathy Giusti. In 1996, Giusti was diagnosed with multiple myeloma. Multiple myeloma is a cancer of the plasma cell. As the second most common blood cancer, an estimated 30,770 adults (16,400 men and 14,730 women) in the United States will be diagnosed with the disease in 2019 and an estimated 12,770 people are predicted to die from the disease.1

When Giusti was diagnosed over 20 years ago, her prognosis was even more grim. At the time, there was limited research funding, no effective treatments, and very few clinical trials in the pipeline. The life expectancy for patients diagnosed was only 3 years.2

Giusti set out to change all of this. She enlisted her sister, Karen Andrews, to help. With the personal knowledge of what a multiple myeloma diagnosis feels like and with their combined business acumen, they founded the Multiple Myeloma Research Foundation.

The Multiple Myeloma Research Foundation (MMRF) seeks to find a cure for multiple myeloma by accelerating the development of next-generation treatments. To accomplish this goal, they recently announced the launch of CureCloud™, a centralized data hub that generates, aggregates, and visualizes data to accelerate the delivery of precision medicine to multiple myeloma patients. 1

With the launch of CureCloud, the MMRF hopes to address a perplexing challenge: that of sharing comprehensive data to develop insights that inform and improve care for multiple myeloma patients. We will partner with MMRF and other organizations, such as the Broad Institute, to provide classification of genetic variants and candidacy for relevant clinical trials via our interpretation and reporting platform, Clinical Genomics Workspace.

For more information and to view the announcement about CureCloud, visit the Multiple Myeloma Research Foundation website. 

References

  1. MMRF Launches CureCloud™ to Advance Precision Medicine. Multiple Myeloma Research Foundation. https://themmrf.org/2019/06/mmrf-launches-curecloud-to-advance-precision-medicine/. Published June 12, 2019. Accessed June 12, 2019.
  2. MMRF Founders - Kathy Giusti MMRF Founder - Karen Andrews MMRF Founder. Multiple Myeloma Research Foundation. https://themmrf.org/about-mmrf/leadership/mmrf-founders-kathy-giusti-mmrf-founder-karen-andrews/. Accessed June 12, 2019.

 

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