DSDR Director attends NCI Workshops in Rockville, MD on October 6-8, 2014

The DSDR director, Mary McEniry, attended two workshops held by the National Cancer Institute (NCI) on October 6-8, 2014 in the Washington, D.C. area.

The first workshop on October 6-7, entitled "Novel Approaches and Challenges to Data Harmonization", was sponsored by the NCI's Epidemiology and Genomics Research Program (EGRP).

An overview from the workshop website:

The breadth and scope of studies utilizing an epidemiologic framework has grown significantly during the last few decades. This trend is mainly due to the increasing complexity of the research questions being asked and the consequent need to coalesce data across many studies. In fact, the case has been made that "integrative epidemiology"--the integration and analysis of heterogeneous and multi-layered data sets—may be the key to advance the practice of epidemiology in the twenty-first century.

The current climate of scarce resources necessitates assembling these expansive and heterogeneous data sets through extensive multi-disciplinary collaboration or consortia. Throughout the last decade, consortia-based research has grown exponentially, has contributed to a better understanding of the complex etiology of cancer, and has provided fundamental insights into key environmental, lifestyle, clinical, and genetic determinants of these diseases and their outcomes. Using existing epidemiology data sets and complementing them with newly acquired genomic, clinical and other types of data can empower researchers to address important health issues more expeditiously and in a more cost-effective manner than through the creation of new large research infrastructures. Data harmonization, or the process of assessing compatibility of data accrued from independent sources, is an essential step to support these integrative analyses.

The goals of the Novel Approaches and Challenges to Data Harmonization Workshop were:
  1. To explore the theory and practice of multi-level data harmonization;
  2. To consider available tools and new approaches;
  3. To review representative case-studies; and
  4. To develop recommendations for best practices.

The second workshop on October 8, entitled "NCI Workshop on Broadening Epidemiologic Data Sharing", was also sponsored by the EGRP.

An overview from the workshop website:

Broad accessibility to peer-reviewed scientific publications has ushered in an era of open access in the 21st century. A 2013 memorandum from the Office of Science and Technology Policy directing Federal agencies to "support increased public access to results of research... funded by the Federal Government" suggests that broader access to scientific data will exist in the near future. There have been major advances in genomic data sharing with the establishment of new infrastructure, resources, and policies. However, additional approaches are needed for sharing individual-level epidemiologic data to enhance the pace of scientific progress in cancer epidemiology.

The purpose of this workshop is to identify opportunities and resolve barriers to facilitate controlled access by the scientific community to epidemiologic data from observational studies. The meeting will bring together key stakeholders from EGRP, the Division of Cancer Control and Population Sciences (DCCPS), the Division of Cancer Epidemiology and Genetics (DCEG), the NCI Cohort Consortium, and the extramural scientific community. Attendees will be invited to engage in thoughtful and candid discussion about how to facilitate and support increased sharing of epidemiologic data.

The workshop will provide a forum to further the discussion on data sharing and corresponding challenges. The goals of the workshop are to:
  1. Identify challenges and possible solutions to sharing epidemiologic data;
  2. Identify key elements and potential epidemiologic data sharing model(s); and
  3. Identify resources needed to facilitate increased epidemiologic data sharing.