EGRP Hosts Workshop on Understudied Rare Cancers
The
Epidemiology and Genetics Research Program (EGRP) sponsored its second
leadership workshop bringing together investigators to identify ways
to stimulate research on understudied rare cancers on September 11-13,
2005, in Boston. EGRP is responsible for managing NCI’s extramural
epidemiology research portfolio.
EGRP-funded investigators conducting research on understudied rare
cancers were invited to the workshop to identify gaps in epidemiologic
and genetic research on the cancers, and to discuss ways to foster
collaborations and partnerships among basic, clinical, and population
scientists within the extramural and intramural communities. The
National Institutes of Health’s Office
of Rare Diseases also
cosponsored the workshop.
“The four major cancers, lung, breast, prostate, and colorectal
cancer, comprise the lion’s share of our portfolio, but there
are other cancers – some of them highly lethal – that
need more study,” said Ed Trapido, Sc.D., EGRP Associate Director. “We
sought the help of our investigators to identify the gaps and stumbling
blocks and suggest new approaches to move forward epidemiologic research
on these diseases.”
Focus of Workshop
The workshop focused on cancers of the brain, eye, oral cavity,
pharynx, head, neck, endometrium, ovary, testis, digestive and urinary
systems, larynx, bones, joints, soft tissues, thyroid, and other
cancers of the endocrine systems, non-Hodgkin’s lymphoma, Hodgkin’s
disease, leukemia, myeloma, and Kaposi's sarcoma. Pancreatic cancer
was excluded because it is addressed in a trans-NCI Program Announcement
that EGRP currently is cosponsoring (PA for Pilot Studies in Pancreatic
Cancer (PA
05-116)).
Nancy Mueller, Sc.D., of Harvard University and Dana-Farber Cancer
Institute, gave the keynote address on lessons that she has learned
in studying Hodgkin’s lymphoma over the past 30 years. Dr.
Mueller has been an EGRP grantee for 28 years. She has found the
research experience richly rewarding but spoke of times when funding
for epidemiologic research was a problem, and there were few advocates
for such research, few epidemiologists with whom to share data, and
few basic scientists interested in collaboration. The reward of rare
cancer research lies in the opportunity to make a difference, she
said. “It’s really a labor of love...you do it because
you care.”
Consortia and Transdisciplinary Science
Working groups discussed advancing research on understudied rare
cancers in the context of consortia and transdisciplinary science.
The consortia approach is an emerging paradigm in which large interdisciplinary
teams of scientists think and work collaboratively using common questions,
protocols and methods, and perform coordinated parallel or pooled
analyses. EGRP currently is supporting or assisting in the development
of epidemiological research consortia on 15 types of cancer. Technology
and team science are changing the landscape of research, said Dr.
Trapido.
A panel chaired by Robert Croyle, Ph.D., Director, Division of Cancer
Control and Population Sciences (DCCPS), of which EGRP is a part,
described some of the resources and potential opportunities for collaboration
or partnership that are available through the Division. DCCPS supports
extramural initiatives in cancer surveillance, quality of care, tobacco
control, behavioral research, energy balance, survivorship, health
disparities, and in the dissemination and diffusion of new knowledge,
as well as epidemiology.
Cancer advocates also spoke on the role of epidemiology in the life
of cancer survivors and how they may be helpful to investigators.
This panel was chaired by DCCPS’ Julia Rowland, Ph.D., Director,
Office of Cancer Survivorship, and included Douglas Bank, of the
Testicular Cancer Resource Center; Richard Boyajian, R.N., M.S.,
of the Lance Armstrong Foundation Adult Survivorship Clinic, Dana-Farber
Cancer Institute; and Cary Zahrbock, of the National Coalition for
Cancer Survivorship.
Themes To Emerge
Four major themes emerged from the workshop discussions. The investigators
expressed the need for: (1) improvements to the review process for
rare cancer proposals, (2) targeted funding for rare cancers; (3)
suggestions for promoting formation of consortia, and (4) exploration
of the potential usefulness of greater involvement of cancer registries
in research.
EGRP plans to use the information gathered from the workshop to
prioritize funding mechanisms, develop new initiatives, and to discuss
review issues with appropriate National Institutes of Health (NIH)
staff. The summary and slide
presentations from The 2nd Epidemiology
Leadership Workshop: Understudied Rare Cancers are available
on this
Web site. Included are talks on design issues in the study of rare
cancers, creating consortia, transdisciplinary science, and DCCPS
resources and opportunities.
Also on EGRP’s Web site is the report from The 1st NCI
Epidemiology Leadership Workshop, which was held in 2004 to
identify barriers and gaps in cancer epidemiology and advance solutions
to studying tobacco, diet/energy balance, and genes.
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