Democratizing the Science, Accelerating the Cure

Kathy Giusti

Kathy Giusti is being honored as a Champion of Change for the vision she has demonstrated and for her commitment to open science.

Multiple myeloma is a fatal blood cancer with a five-year survival rate of only 41 percent – one of the lowest of all cancers. As an organization, we have worked tirelessly to remove barriers slowing research into this disease, and the progress we have helped make – namely six new treatments in the span of 10 years – has had a meaningful impact on patients. Despite the progress, however, all multiple myeloma patients will inevitably relapse, necessitating new lines of therapy that effectively treat the disease.

Significant challenges exist. Chief among these is multiple myeloma’s staggering genetic diversity. Advances in basic science have taught us that multiple myeloma, like most cancers, is not a single disease; rather, it is comprised of several distinct sub-types, each one defined by abnormal genes and disruptive proteins that allow cancer cells to thrive. Developing and matching patients to treatments that precisely neutralize these abnormalities is key to achieving longer-lasting remission and cures.  

In 2011, we took a giant step forward to this goal with the launch of the CoMMpass℠ study, a landmark, $40 million study that brings together competitors from pharmaceutical and biotech companies, academic institutions, and community cancer centers to work. The group is working as one to define multiple myeloma’s sub-types and to assess which drugs work best for different sub-types. One thousand newly-diagnosed multiple myeloma patients will be followed longitudinally over five years and their tissue samples, genetic information and various disease and clinical outcomes will be extensively analyzed. We believe that CoMMpass data will allow us to precisely match patients, based on their sub-type, with treatments that offer the best chance of long-lasting remissions with fewer effects and cures.

Importantly, all data from CoMMpass will be placed into a publicly available, open source, IP-free data ecosystem, together with data from other MMRF-driven initiatives and other datasets. This will create one mega dataset that is unprecedented in its depth and breadth.

We encourage anyone interested in using or contributing to this robust dataset to be part of our search for a cure. The MMRF Researcher Gateway, scheduled to launch in September 2013, draws upon the wisdom and creativity of the crowd to advance discovery. Basic analytic tools make data accessible to a diverse group of users—scientists, pharmaceutical companies, health care organizations, physicians, and even patients—without requiring strong IT skills.

As a complement to the Researcher Gateway, the MMRF Community Gateway, also to be launched in September, will engage patients in the research process. The Community Gateway will create a dynamic, online community of myeloma patients and will allow patients to better understand their disease and treatment options, to share their data and experiences, and to take action by (optionally) sharing their data with research studies or joining clinical trials.

On behalf of the entire MMRF team and our partners in CoMMpass, we thank the White House for recognizing the promise and significance of our approach. We are honored to have been named an Open Science Champion of Change.

Kathy Giusti is the Founder and Chief Executive Officer of the Multiple Myeloma Research Foundation (MMRF).

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