caBIG® and the Love/Avon Army of Women Are Partnering to Enable Large-Scale Science in Breast Cancer
There were 38 different sessions. More than 1,000 attendees from 450 organizations. 13 countries represented. 40-plus caBIG® tools showcased. And countless new ideas. But for many participants, the highlight of this year's caBIG® Annual Meeting was the unveiling of a collaboration between caBIG® and the Love/Avon Army of Women, a groundbreaking initiative aimed at partnering one million women with scientists to battle breast cancer.
Through the partnership, caBIG® infrastructure and tools will make it feasible to do something totally new: build the largest ever online cohort to study women to improve prevention, diagnosis, and treatment of breast cancer.
"This collaboration is a real-world example of how caBIG® leverages biomedical informatics to connect consumers and researchers," said Ken Buetow, Ph.D., Director, NCI Center for Biomedical Informatics and Information Technology. "This effort will enable an unprecedented level of participation on the part of patients and consumers. And, in so doing, will also drive faster and more productive research based on access to huge amounts of clinical and molecular data."
caBIG® technologies developed over the past several years are enabling a 21st century research paradigm in which consumers are brought into the research effort early in the design of studies as the source of information and new hypotheses. Through the use of Web 2.0 tools that are often applied in social networks, women of all ages and backgrounds across the nation can sign up and respond to secure online questionnaires concerning their health history. This population of women is then "connected" to the research community via the web, and researchers who are partners in this initiative can design study protocols that reflect the clinical profiles of potential research participants housed in the database. The benefits of such an enterprise are already being realized through faster patient accrual and richer study populations.
At the meeting Dr. Susan Love remarked, "This is a model for big science for the twenty-first century, powered by caBIG®. We're going to empower the women to be part of and feel invested in the research by including them in the collection and maintenance of data and by engaging them in figuring out the questions they want answered through the first large Internet-based cohort."
This effort builds upon caBIG® capabilities to advance clinical research, including software tools that enable researchers to collect, store, query and share the massive amount of data necessary to realize the promise of a clinical research enterprise of the 21st century.
"We believe that advances in health will be driven in the future by the velocity of information—that is, the ability to broadly connect members of the healthcare community in a seamless, secure network that facilitates rapid data sharing, collaboration, and continuous enhancement of knowledge to inform the bench-to-bedside-to-bench continuum," said Buetow.
The tools and infrastructure of caBIG® can be applied in a variety of biomedical settings beyond the cancer community, and this collaboration provides a model for the use of caBIG® to involve other groups of individuals in research. "These tools are not restricted to cancer — they can be used generically — and there is a growing demand for caBIG® capabilities both inside and outside the cancer community," said Buetow. "We anticipate that many other disease areas can gain significantly from consumer participation. This may well be the start of a whole new research paradigm."
Additional Resources
- View the presentations delivered by Drs. Buetow and Love at the 2009 caBIG® Annual Meeting: http://cabig.cancer.gov/resources/presentations/
- Listen to Dr. Buetow and Dr. Love discuss the new collaboration on a Podcast: http://cabig.cancer.gov/resources/podcasts/
