The Asia Cohort Consortium Coordinating Center with approximately 50 active members, seeks to understand the relationships among genetics, environmental exposures, and the etiology of disease. Its mission is to serve as a platform for cross-cohort collaborative projects and combined analysis and to act as an incubator for new cohorts. We have been successful in the essential and difficult task of building community among participants and reducing some of the overhead of collaborative epidemiologic research. Our first project, the Body Mass Index project, has been a resounding success. More public discussion is needed regarding the role and structure of coordinating centers. We have devised a research agenda and have begun conducting some of this research.
Collaborative epidemiologic research, while standard practice, is difficult, and can impose a heavy administrative burden on investigators. A well-built coordinating center (CC) can reduce some of the overhead by managing the administrative aspects, facilitating collaborative activities, and empowering investigators to focus on the science—improving every stage of the study. However, there is little published research and little in the way of “best practices” to guide the CC director. The Asia Cohort Consortium Coordinating Center (ACC CC) is sharing our experience and plans future research on coordinating centers.
'Because many of the most exciting biomedicine tools must be realized and validated in very large population studies, the ACC was designed to act as such a population laboratory.'
First proposed in 2004, the ACC, with 50 active members, is a consortium of cohort-based studies. The ACC seeks to understand the relationships among genetics, environmental exposures, and the etiology of disease. The mission is to serve as a platform for cross-cohort collaborative projects and to act as an incubator for new cohorts. In 2007, Fred Hutchinson Cancer Research Center (FHCRC) began funding ACC CC activities.
The CC focuses on collaboration development; operations management; statistical and data management; and communications infrastructure and tool development.
It is necessary, but difficult, to instill trust and a sense of community among participants, especially because they compete for funding. A policy & procedures manual was an early step in building community because it set forth expectations, rights, and responsibilities. Our recent meeting in Washington, DC, was much more relaxed and open. Registering a domain name legitimized the organization; creating email lists helped the ACC gel as a community. Face-to-face meetings that include social time build collaborations across various professional boundaries.
Part of our extensive administrative effort includes information management. We therefore produce a wide range of documents, data sets, specimens, and tools.
A key goal is data harmonization so that data sets from independent cohorts can be combined and analyzed as one meta-cohort. An experienced Common Data Elements (CDE) specialist analyzed the instruments used by several cohorts to establish a core set of questions for guiding research that will ultimately result in harmonized data sets. At least one member of our statistical and data management team (SDMT) attends each general membership and working group meeting to guide the selection and definition of data sets.
Because of the great importance of communication infrastructure, we immediately developed a collaboration portal that, we hope, will eventually supplant email and listservs. Because of the portal, the CC becomes a participant in collaboration.
Our staff includes a Principal Investigator, who is also one of the two co-Chairs of the ACC; a full-time project manager; and—working part-time—two statisticians, a Common Data Elements specialist, a programmer, and two PhD-level investigators in the areas of statistics and biostatistics.
The CC has been key to a highly successful pilot project on Body Mass Index (BMI) in Asian populations—the first cross-cohort collaborative project of the ACC. ACC CC clearly has the resources and expertise to support a scientifically important and interesting study. ACC cohorts are clearly interested in harmonizing and pooling data for important projects. Several new projects using the BMI dataset are underway.
The ACC submitted its first two grant proposals to NCI in 2009; both used the R03 small grants mechanism and focus on expanding the work on BMI. Both were funded. However, it is difficult to secure funding directly for infrastructure—despite its great importance. Therefore, we are writing grants to fund larger projects that will include substantial support for the CC. We have also been extremely fortunate to receive generous support from the FHRC.
We believe that the dearth of public discussion about the role and structure of CCs for collaborative cancer-epidemiology research is detrimental to the progress of science. We propose a research agenda regarding CCs that includes measuring success and determining best practices. Our group has begun doing some of this research here at FHCRC, using several of the CCs at the Center that have, collectively, decades of experience. During the first three years of the ACC CC, we have developed an innovative structure and method of working, tripled our meeting attendance, submitted two manuscripts to top-tier journals, and received NCI funding. We have found that a well-run CC allows scientists to remain focused on science rather than spending time as administrative managers and negotiators.