Celebrating the Accomplishments of FasterCures’ Consortia-pedia Catalogue
by Taylor Cusher, Associate Director
Five years ago, FasterCures turned our attention toward the emergence of consortia in medical research. With some collaborations just starting and others having worked together for years, there were several fundamental questions on our mind: How many consortia are there in the medical research space? Who is involved in them? What are they working on? Are these collaborations really spurring medical research to happen more quickly and efficiently?
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)
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].
Thank you again for your interest, support, and use of Consortia-pedia throughout the years. Stay tuned for our next efforts and new directions!
Harnessing the Power of Collaboration in Cancer Genomics
by Gabrielle Minton, Intern
Harnessing the Power of Collaboration is a blog series analyzing hot topics, trends, and new initiatives in the biomedical R&D ecosystem. Using FasterCures’ Consortia-pedia Catalogue as an information base, this series explores how collaborations have been working to change the nature of biomedical research.
The Individual and Collective Impact of Cancer
It’s not hard to recognize the vast impact cancer has, both individually and collectively. Cancer currently persists as the second leading cause of death in the United States, behind heart disease. The American Cancer Society projects there to be 1,735,350 new cancer diagnoses in 2018.
Of the 10 leading causes of death in the U.S., genetics are implicated in nine of them—including cancer. Identifying the genomic mechanisms of cancer provides a huge advantage in detection and treatment. Monitoring and screening tests are able to determine the risk of attaining certain cancers, such as breast cancer and colorectal cancer. For example, among those with a higher risk of hereditary breast cancer, a genetic test can detect cancer development early on in progression, leading to better health outcomes.
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.
Go to the Consortia-pedia Catalogue to get more information about these groups and explore nearly 500 profiles of consortia across all of biomedical research.
Partnering for Cures Gathers Hundreds of Medical Research Leaders
Forging Partnerships and Finding Solutions for Patients
NEW YORK, NY--(Marketwired - November 02, 2015) - More than 700 medical research leaders from around the world met today in New York City with a singular goal: to reduce the time and cost of getting new therapies from discovery to patients. Convened by FasterCures, a Washington-based center of the Milken Institute, senior government officials, patient advocates, scientists, major investors, industry CEOs and philanthropists came together to share their novel research models, and find the partners needed to advance them.
"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
CONTACT INFORMATION
Contact
Gillian Parrish
Director, Communications
FasterCures, a center of the Milken Institute
+1 (202) 336-8921 DIRECT
+1 (202) 744-8965 MOBILE
[email protected]
FasterCures Releases Framework Report on Medical Research Consortia
The concept of collaboration is not new to biomedical research and it comes in all forms. In addition to the challenge of understanding the biology of disease, researchers are continuously introduced to new tools that increase our ability to discover and develop drugs. However, these tools are complex and no single researcher - and very few organizations - has all the expertise and resources to take the challenge on their own.
Collaborations between competing organizations used to be a rarity, but now they are bread-and-butter of biomedical research. And nowhere is this more apparent than in the explosion of research consortia around the globe. FasterCures identified 387 consortia that have been launched since 1995, with 62 in 2012 alone. However, the landscape has gone largely unmapped, resulting in confusion about the multitude of efforts and mechanisms for participation.
“This model of partnership provides a neutral ground to coordinate the sharing of risks, costs, resources, data, and expertise in the pursuit of a unified research mission,” said Mark Lim, FasterCures’ Associate Director of Medical Research innovation. “However, science has gotten more complex, so it’s hard for people developing medical products to answer all the questions they have. This report helps to establish a framework around the most commonly asked questions about designing and managing a consortium.”
In this report, FasterCures analyzes 21 consortia that represent the diversity of models used to bring together cross-sector partners to accelerate biomedical research. Since most consortia are still in the early stages of implementation with a wide variability in mission and governance, there is no attempt to directly compare or rank consortia. Instead, analysis is presented under seven partnership components highlighting existing models, each of which can be downloaded at: www.fastercures.org/consortiapedia.
Governance
Financing
Human Capital
Intellectual Property
Data Sharing
Patient Participation
Measurement of Impact
Key Findings
Sectors That Initiate Consortia
Industry (16%)
Academia (9%)
Healthcare systems (2%)
Third Party Organizations (21%)
Foundations/Nonprofits (8%)
Government (44%)
Top Patient Populations Addressed by Consortia
Tuberculosis (9)
Diabetes (15)
Alzheimer’s (17)
Rare Diseases (28)
Cancer (42)
Products Created By Consortia
Broadly-Used Tools (45%)
Defined as standards, methods, or technologies that can used by all stakeholders to advance their independent research
Biomarkers (26%)
Specific Products (16%)
Fundamental Scientific Knowledge (13%)
Data Sharing Trends
1 in 4 product development consortia are creating data sharing platforms
3 in 10 tool-developing consortia are focused on methods or standards for data sharing
“While written primarily with these audiences in mind,” said FasterCures Executive Director Margaret Anderson “the report also serves as valuable tool for any entity wishing to better understand the collaboration-by-consortium trend and its impact on medical research and development – including payors, government, providers, industry, academia, patients, nonprofits and investors.” The report also details common traits shared by successful consortia and roadmap recommendations for organizations seeking to initiate or join their own consortium.
