Enhancing Observational Data Collection to Inform Cancer Research and Care

(Music) Well, everybody in the cancer
research community clearly recognizes the value of
clinical trials evidence for translating research
into practice. What’s often less appreciated
is the breadth of observational data that can complement this
evidence, and inform both our research and cancer care. In talking to a lot of the
members of our research community, one thing that’s
become clear is that most investigators are aware of
some of the observational data resources that we support
that are currently available. But most people really
are familiar with just a few of them. In addition, we’ve been
adding to the armamentarium of observational data sources,
disseminating them to the research community. So one of our motivations in
putting together this report, which is really kind of a top
level summary of resources— it doesn’t provide a lot
of granular detail— is to give people a sense
of what’s available, but also to welcome input from the community
about what needs to be built, what resources are missing. The types of data are so varied
and the research needs are so diverse that clearly we
can’t support every kind of data source that someone might want. So we have to prioritize. There are a number of examples
of this, both in terms of enhancements of current
resources, but also the creation of new ones. So, many people are familiar
with the SEER registries, our cancer registry system. But they may not be familiar
with the number of enhancements and the way that we’ve been
growing the SEER Program to make it more useful and relevant to
all kinds of cancer research. Some of our observational data
sources are ones that we’ve made a long-term,
ongoing commitment to. So the cancer registries
are an example or some of the epidemiological cohorts that
we’ve supported for many years, or even decades in some cases. In addition to the cancer
registries, we’ve had a number of observational data
resources from surveys, but also from data collected by
other federal agencies and data from other sources. Our focus has been to try
to bring these data sources together, to link them in useful
ways, and to make them more usable to the
research community. This report also tries to give
people a sense, not in great detail, but a sense of what this
whole menu of possibilities is, so that either they or
their post-doctoral fellows or graduate students have access
to these and can fully utilize them, oftentimes to answer a
research question that might be answered through an RO1 grant,
but may be more cost effectively or more rapidly by using data
that are already available. One of the other challenges that
we welcome input on is what is NCI’s appropriate niche
within the larger context of observational data. We’re really looking for things
that NCI can uniquely do, and kinds of data that meet
unique needs of the cancer research community. So we want to be mindful of what
other organizations are doing, about what other agencies are
doing, what kinds of data that they’re collecting, how we might
work through partnerships, but especially what are the top
priorities for cancer research in the observational data realm? And how can we meet those needs?
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