#consortiapedia

From our unique vantage point within the ecosystem, we set out to understand the landscape, share best practices, and highlight the essential questions to answer for anyone interested in establishing new collaborative efforts, expanding existing ones, or re-orienting early-stage programs. This resulted in a 2013 Science Translational Medicine paper, Consortium Sandbox: Building and Sharing Resources, and FasterCures’ Consortia-pedia report. In researching, understanding, and writing about these collaborations, we collected information about nearly 500 consortia around the globe and made them public through the Consortia-pedia Catalogue.

Since its debut four years ago, the Consortia-pedia Catalogue has had more than 16,000 unique visitors from 124 countries.

The most popular profiles (and their areas of focus) have been:

1.     Beta Cell Biology Consortium (Type 1 diabetes)

2.     Molecular Diagnosis and Risk Stratification of Sepsis Consortium (Sepsis)

3.     Accelerating Medicines Partnership (Alzheimer’s disease)

4.     Clinical Decision Support Consortium (electronic health records)

5.     TB Drug Accelerator Program (tuberculosis)

The top terms users have searched for have been:

1.     Alzheimer’s

2.     Cancer

3.     Pfizer

4.     Biomarker

5.     Multiple sclerosis

We are thrilled and thankful for the attention and support of all who have used the resource, promoted it, and learned from it. As the field has changed in the last five years, it is also time for FasterCures’ focus to adjust once again to emerging topics. The Consortia-pedia Catalogue will no longer be updated as of August 2018. While the site will remain available through the end of the year, we will not be refreshing or adding any new profiles. If you are interested in the details behind the Catalogue, please reach out to [email protected].

The millions of cells that make up a tumor are distinct from one another. Likewise, no two cancers are alike. Two breast cancer patients of the same age, physical characteristics, and even comparable medical histories, will have very different tumors. Applying genetic testing and genomic analysis to cancer research allows scientists to identify specific changes in the human genome that cause cancer and provides researchers with unparalleled insight into the key mechanisms of tumor progression in humans.

With such a diverse and widespread reach, the need for collaborative solutions to tackle the problem of cancer is great within the biomedical research and development space.

Beating Cancer Together

Collaboration among leaders in the field is vital to cancer research progress. Consortia documented through FasterCures’ Consortia-pedia Catalogue demonstrate the potential of this collective work in cancer genomics.

The catalogue encompasses almost 500 consortia that serve various patient populations all over the world. Of these 500 consortia, there are 60 dedicated to cancer research—placing this issue as the leading focus of consortia in the database. Of these 60 consortia collecting in Consortia-pedia, 15 have an emphasis on cancer genomics.

The International Cancer Genome Consortium (ICGC) is one consortium that promotes global collaboration in cancer research, with a focus on genomics. The ICGC brings together organizations in Asia, Europe, North America and South America to accomplish their goal of creating a comprehensive catalogue of genetic abnormalities in 50 different cancer types. Currently, there are 88 project teams studying over 25,000 tumor genomes ranging from lung cancer to rare pancreatic tumors. Multiple ICGC member institutions, including those in France and Korea, recently canvassed 560 whole genome sequences from breast cancer patients to discover the origin of somatic mutations in breast cancer. While there is more to be done in this field, the study illuminated the majority of mutations driving breast cancer.  

Another impressive consortium within Consortia-pedia, the Children’s Brain Tumor Tissue Consortium (CBTTC), is making a huge impact toward advancing cancer research. The CBTTC, based out of the Children’s Hospital of Philadelphia, is a multi-institutional collaboration committed to both genomic and molecular research and treatment of childhood brain tumors. Founded with the intention of promoting open access to data, the research program currently consists of 17 institutions across the world and invites strategic discoveries, as well as innovative cures.

The CBTTC runs the largest pediatric brain tumor biorepository in the world, encompassing over 24,000 samples of more than 30 brain tumor types. This large scale repository is linked with clinical information to enable a comprehensive picture of each biopsy specimen. Unprecedented genomic, biomedical data on childhood diseases spanning pediatric brain tumors to rare pediatric disorders are shared with the entire scientific community through an online platform called Cavatica.  

This broad scale, yet in-depth data set removes research from its silos and enables future cancer treatment by discovering the variability in tumors from patient to patient.

The variability within cancer is what makes the disease so difficult to treat—there is no “one size fits all” approach. Genomic discoveries have opened the door to an individualized approach of treating disease, also known as precision medicine.

While these initiatives are a portion of the genomic cancer research that is currently underway, they represent a growing strategy among cancer researchers. The scientific advances unfolding from genomic analyses and precision medicine offer newfound opportunities for collaborative efforts and therapeutic success.

"The biomedical research paradigm has changed," said Margaret Anderson, executive director of FasterCures. “The innovation connectivity sweeping the world is showing us a path forward. That and just plain bold, disruptive, and tenacious efforts by everyone in the system."

Francis Collins, M.D., director of the National Institutes of Health, noted, "We are at a remarkable moment in biomedical research, where we're figuring out the fundamentals -- how life works and how disease occurs. Now we need to turn this opportunity into medical advances -- health promotion, disease prevention, and treatment of illness when it strikes."

Recognition of the growing demand for patient input echoed across the meeting. The healthcare establishment, which has been slow to accept that personal data have value for research, is beginning to embrace elements of the consumer revolution, and find effective ways to more meaningfully integrate patient perspectives into drug development and regulatory decision-making.

Dana Ball, Executive Director and Co-Founder of T1D Exchange and CEO of Unitio, Inc., remarked, "There is now substantial evidence about what patients need, where they see value, and what they're willing to pay for."

Punctuating the value of patient engagement and cross-sector collaboration, FasterCures today released the following new resources:

Consortia-pedia - FasterCures analyzed more than 400 medical research consortia around the globe, and found that they address 165 diseases and engage 3,000 unique sponsors and partners. Nearly half of those consortia develop tools, 94 of them conduct biomarker research, and 135 engage in data sharing. These consortia include collaborations such as the more than $5 billion Innovative Medicines Initiative, the National Institutes of Health-driven Accelerating Medicines Partnership, and the pre-competitive Biomarkers Consortium. Find this first-of-its-kind free, searchable, online resource at www.consortiapedia.fastercures.org.

The Power of Ideas - Fifteen compelling essays that include David Panzirer's candid take on why he's determined to find a cure for Type 1 diabetes, Anne Wojcicki's vision of what it means to have a consumer-driven healthcare revolution, and Tom Insel and Kafui Dzirasa's insights on redefining mental illness. This collection of big ideas will deliver a good dose of optimism grounded on innovation, resiliency and purpose.

Patients Count: the Science of Patient Input - Learning from health economics, marketing and engineering, a new science of patient input has emerged, one that embraces data as a means for measuring patient-centered outcomes and quantifying patient preferences. Today, FasterCures released From Anecdotal to Actionable: The Case for Patient Perspective Data, which presents a model for advancing the collection and application of Patient Perspective Data, along with initial ideas for how such data might inform drug development and regulatory processes.

Held at the Grand Hyatt New York, Partnering for Cures is open to the public and to members of the media (registration is required). For general registration information, go to www.partneringforcures.org/registration. Members of the press may apply here to receive complimentary registration.

The Partnering for Cures meeting consists of panels on hot-button issues, presentations about compelling personal experiences, facilitated working sessions, town hall-style sessions, informal conversations among creative innovators, and more. Watch videos of today's sessions and check out tomorrow's program at www.partneringforcures.org.

About FasterCures

FasterCures, a center of the Milken Institute, is an action tank, determined to remove barriers to medical progress. We have only one goal: to save lives by speeding up and improving the medical research system.

www.fastercures.org; @FasterCures

About the Milken Institute

The Milken Institute is a nonprofit, nonpartisan think tank determined to increase global prosperity by advancing collaborative solutions that widen access to capital, create jobs and improve health. It conducts data-driven research, convenes action-oriented meetings and promotes meaningful policy initiatives.

www.milkeninstitute.org; @milkeninstitute

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