Partnering to Accelerate Science
Published: October 23, 2017
New York, New York, October 23 -- The Crohn’s & Colitis Foundation (the Foundation) celebrates the visionary academic and industry scientists, The Leona M. and Harry B. Helmsley Charitable Trust, IBD patients, and Foundation staff who are partnering to create and sustain IBD Plexus®, a first-of-its-kind research information exchange platform designed to centralize data and biosamples from diverse research studies. The powerful new initiative is designed to advance our understanding of Crohn’s disease and ulcerative colitis, or inflammatory bowel disease (IBD), and significantly accelerate research driving toward precision medicine and cures for IBD.
James Lewis, MD, MSCE, Professor of Medicine and Clinical Epidemiology at the Perelman School of Medicine at the University of Pennsylvania, led the planning process to conceptualize and design IBD Plexus (named for its complex network of integrated components) and serves as its Chief Scientist. “We have seen breakthrough discoveries in IBD in recent years, putting us on the path toward identifying effective, personalized treatments, and potentially, cures,” he explains. “There is a strong and growing demand from both the medical and patient communities for new therapies that will keep IBD in remission, better tools to help select the right therapy for the right patient, and practical ways to reduce variability in the quality of care for individual patients.”
A wealth of research data is being generated through studies and clinical care settings, as well as from patients themselves. However, there is a lack of data standardization across research projects; information is often siloed and accessible only to those who are part of specific studies or programs. The robust technology of IBD Plexus now eliminates these challenges by centralizing data and streamlining access.
“A snapshot of data generated in isolation has limited value in advancing the science. The IBD Plexus platform’s novel technology provides the capabilities to aggregate large numbers of patient experiences and link longitudinal clinical and patient-reported data to molecular data across studies to achieve a critical mass of information, and speed new treatment discovery and development,” remarks Angela Dobes, Senior Director of IBD Plexus.
“IBD Plexus provides the infrastructure and capacities to dramatically shift the paradigm, and facilitate and accelerate IBD research,” said the Foundation’s Chief Scientific Officer, Caren Heller, MD, MBA. “Harnessing the transformative power of the platform, researchers have the tools and data that will lead us to identifying the right treatments for the right patients, and ultimately to cures.”
The initiative’s development is made possible through the generous support of the Helmsley Charitable Trust. “Helmsley is committed to finding cures for Crohn’s disease by funding innovative research that will lead to improved prevention, diagnosis, treatment, and management of this debilitating disease,” said Sandor Frankel, Trustee of the Helmsley Charitable Trust. “We’re thrilled at the prospects of what this important new platform can achieve to advance therapies, care, and the path to cures for people living with IBD.”
IBD Plexus currently includes millions of data points from four unique research initiatives. Researchers leading these studies have been critical drivers of IBD Plexus’ development and integration, enabling an unprecedented collection of data through their partnership and early adoption of the research exchange. Partnering initiatives include:
- Study of a Prospective Adult Research Cohort with IBD (SPARC IBD), a multi-centered longitudinal study of adult IBD patients, that will collect and link diverse data through the course of a patient’s disease;
- IBD Qorus, the Foundation’s flagship quality of care program, designed to improve care and health outcomes for patients living with IBD;
- Pediatric Risk Stratification Study (RISK), comprised of the largest, well-characterized group of pediatric patients in the history of Crohn’s disease research; and
- IBD Partners, a patient powered research network of more than 16,000 IBD patients from across the country, who provide self-reported data on a broad array of issues concerning patients’ disease management and quality of life.
Critically important to IBD Plexus’ development are a number of leading technology and other vendors, who are working together with the Foundation to build the platform. These include:
- Deloitte is building the IBD Plexus data management and analytics platforms, including customized prep-to-research tools enabling researchers to query the database to gain insights and validate hypotheses;
- Salesforce, providing customer relationship management software to enable sustained patient engagement and retention, which is crucial for long-term follow-up studies;
- Biostorage Technologies, a leader in sample management, to store, process, and distribute samples from IBD Plexus’ centralized biobank;
- IBM’s Bluemix, providing infrastructure and high-performance computing servers to create IBD Plexus’ powerful data and analytics platform; and
- Central reference labs, which will optimize sharing of molecular data across the researcher community by turning finite biosamples into reusable uniform data.
“Deloitte’s close collaboration with stakeholders across the research community involves a new way of thinking about, and engaging in, research into disease and patient care,” said Beth Meagher, principal, Deloitte Consulting LLP and federal and non-profit strategy leader. “Using our ConvergeHEALTH Miner platform, we are demonstrating how technology can enable collaboration across an entire ecosystem and drive improvements in patient health outcomes. IBD Plexus will serve as a model for other disease organizations around the world.”
Critical partnerships with industry are also being formed to engage researchers focused on speeding and expanding the treatment discovery and development process. IBD Plexus’ unique capacities support discovery, clinical development, safety surveillance, outcomes research, and comparative effectiveness. Celgene, Boehringer Ingelheim, and Takeda are the very first Premier Industry Members with the vision and deep commitment to enabling cures and transforming care by participating in the IBD Plexus platform.
In acknowledging and honoring the scientists who conceived and are building IBD Plexus, as well as those who enable its development and growth. Michael Osso, President & CEO of the Crohn’s & Colitis Foundation said, “The great promise of IBD Plexus rests in its partnerships among all IBD stakeholders, including academic and industry researchers, patients of all ages, and clinicians and other healthcare providers. The initiative forms and nurtures collaboration and cooperation, and is powered by a shared drive toward accelerating to better care, treatments, and cures.”
About the Crohn’s & Colitis Foundation
The Crohn's & Colitis Foundation is the largest non-profit, voluntary, health organization dedicated to finding cures for inflammatory bowel diseases (IBD). The Foundation’s mission is to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults who are affected by these diseases. The Foundation works to fulfill its mission by funding research; providing educational resources for patients and their families, medical professionals, and the public; and furnishing supportive services for those afflicted with IBD. For more information visit www.crohnscolitisfoundation.org, call 888-694-8872, or email [email protected].
About the Helmsley Charitable Trust
The Leona M. and Harry B. Helmsley Charitable Trust aspires to improve lives by supporting exceptional efforts in the U.S. and around the world in health and select place-based initiatives. Since beginning active grantmaking in 2008, Helmsley has committed more than $1.8 billion for a wide range of charitable purposes. For more information, visit helmsleytrust.org.
About the Founding Premier Members
About Boehringer Ingelheim
Boehringer Ingelheim is one of the world’s 20 leading pharmaceutical companies. Since its founding in 1885, the family-owned company has been committed to researching, developing, manufacturing and marketing novel treatments for human and veterinary medicine. For more information please visit www.boehringer-ingelheim.us, or follow us on Twitter @BoehringerUS.
About Boehringer Ingelheim in Immunology
Boehringer Ingelheim has been involved in Immunology research and development for over two decades and is focused on chronic autoimmune diseases such as Crohn’s disease, ulcerative colitis, systemic lupus erythematosus/lupus nephritis and systemic sclerosis/scleroderma. We proudly invest in our own innovative immunology pipeline and foster external collaborations to help patients in these complex disease areas. As part of our commitment and key priority for our scientists and for the entire research community, we focus our innovation on breakthrough and first-in-class medicines. We are proud to be a founding partner in the Crohn’s & Colitis Foundation’s groundbreaking IBD Plexus as we believe it will be instrumental to finding needed insights and potentially treatments that are critically needed for patients.
Celgene Corporation, headquartered in Summit, New Jersey, is an integrated global biopharmaceutical company engaged primarily in the discovery, development and commercialization of innovative therapies for the treatment of cancer and inflammatory diseases through next-generation solutions in protein homeostasis, immuno-oncology, epigenetics, immunology and neuro-inflammation. For more information, please visit www.celgene.com.
Takeda Pharmaceutical Company Limited (TSE: 4502) is a global, R&D-driven pharmaceutical company committed to bringing better health and a brighter future to patients by translating science into life-changing medicines. Takeda focuses its research efforts on oncology, gastroenterology and central nervous system therapeutic areas. It also has specific development programs in specialty cardiovascular diseases as well as late-stage candidates for vaccines. Takeda conducts R&D both internally and with partners to stay at the leading edge of innovation. New innovative products, especially in oncology, central nervous system and gastroenterology, as well as its presence in emerging markets, fuel the growth of Takeda. More than 30,000 Takeda employees are committed to improving quality of life for patients, working with our partners in health care in more than 70 countries. For more information, visit www.takeda.com/newsroom/.
Takeda Pharmaceuticals U.S.A., Inc. is the U.S. commercial organization of Takeda Pharmaceutical Company Limited. Takeda has a strong commitment to the U.S. with more than 5,000 employees, a significant R&D presence, Oncology and Vaccines headquarters and manufacturing capabilities. Additional information about Takeda Pharmaceuticals U.S.A., Inc. is available through its website, www.takeda.us.
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Crohn's & Colitis Foundation
The Crohn's & Colitis Foundation is a non-profit, volunteer-fueled organization dedicated to finding the cures for Crohn's disease and ulcerative colitis, and to improving the quality of life of children and adults affected by these diseases. It was founded in 1967 by Irwin M. and Suzanne Rosenthal, William D. and Shelby Modell, and Henry D. Janowitz, M.D.