Isis Mikhail EGRP and NIH’s Office of
Rare Diseases (ORD) cosponsored a workshop to stimulate epidemiologic
research on rare cancers in May on the NIH Campus in Bethesda, MD. Many current
and former EGRP grantees expert in epidemiologic research on rare cancers
attended along with scientists from the National Cancer Institute (NCI) and
other components of NIH, survivors of rare cancers, and representatives of
foundations devoted to supporting research and education on these cancers.
“We appreciate the difficulties that investigators focusing on rare
cancers encounter in recruiting sufficient numbers of patients quickly in the
face of often rapidly lethal disease and want to see what we can do to facilitate
research on understudied rare cancers,” said Isis S. Mikhail, M.D., M.P.H.,
Dr.P.H., Acting Chief of EGRP’s Clinical and Translational Epidemiology
Branch.
The workshop’s goals were to:
- Facilitate the development of consortia
among investigators who study rare cancers.
- Provide successful models to
aid in collaborative research of rare cancers.
- Address best practices and
methods for standardization of study tools.
- Develop strategies to foster
collaborative research of rare cancers.
- Provide information about new funding
mechanisms and avenues aimed at promoting further collaborative investigator-initiated
research in the study of rare cancers.
- Open new avenues of communications
between NCI, other NIH Institutes, organizations, advocacy groups, and foundations
to support collaborations in the area of rare cancer research and the development
of new initiatives.
Rare cancers were defined as those cancers for which the incidence rate is
less than 15 cases per 100,000 population or fewer than 40,000 new cases per
year in the United States. Although these numbers are relatively small, all
rare cancers combined account for 27 percent of cancers diagnosed each year
and 25 percent of cancer-related deaths, and the morbidity and mortality that
they cause are increasing.
Working groups spent time focusing on specific cancers that are underrepresented
in EGRP’s grant portfolio, including sarcoma, multiple myeloma, and esophageal
and liver cancer, and on discussing methods and strategies for stimulating
overall research on rare cancers.
Julie Ross
Melissa Bondy
Invited speakers described a variety of consortia as models for collaborations
to pool data, expertise, and other resources to more effectively study rare
cancers. To begin the meeting, Julie Ross, Ph.D., M.P.H., of the University
of Minnesota, gave a presentation on the Childhood Cancer Research Network
(CCRN), which is a unique project to establish a national research registry
of children with cancer, including a tissue bank for tumor and blood specimens,
to use to identify environmental and other causes of childhood cancer. The
project is part of the NCI-funded Children’s Oncology Group (COG).
Melissa Bondy, Ph.D., of the University of Texas M.D. Anderson Cancer Center,
described the establishment of the International Study of Familial Glioma (Gliogene)
Consortia, which has been funded by EGRP since 2006 along with other support
provided by the American Brain Tumor Association, National Brain Tumor Foundation,
and the Tug McGraw Foundation.
Bob Graham Bob Graham, a survivor of carcinoid syndrome, spoke eloquently about his experiences
as a patient and his perspective on improving patient participation in epidemiologic
research.
Among the workshop recommendations, participants encouraged the development
of mechanisms to support and facilitate data sharing, such as creation of central
data management or coordinating centers, standardized exposure collection questionnaires,
and guidelines to assist pre- and post-doctoral researchers and trainees become
involved in rare cancer research and consortia; development of new Web-based
tools to pool existing data; conducting symposia about methodological research
for study of rare cancers at national cancer meetings; and greater collaboration
between investigators and community or advocacy groups and concerned foundations
to improve enrollment in studies.
Rashmi Gopal-Srivastava “The enthusiasm and interest of the investigators attending this workshop
were remarkable. Scientists are ready to work together to further the study
of rare cancers. We expect to build on the momentum of this meeting,” said
Dr. Mikhail. Plans now are under way to publish a summary of the proceedings
and to consider possible funding mechanisms or initiatives based on the input
from the workshop in order to solicit new research proposals. The speakers’ PowerPoint
presentations also will be made available on EGRP’s Web site.
“Synergizing Epidemiologic Research on Rare Cancers” was organized
by Dr. Mikhail and Rashmi Gopal-Srivastava, Ph.D., Director, Extramural Research
Program, ORD. Other members of the organizing committee were Dr. Winn, EGRP
Acting Associate Director; Patricia Hartge, Sc.D., Office of the Director,
Division of Cancer Control and Population
Sciences (DCCPS); Shelia Zahm, Sc.D., Deputy Director, Division
of Cancer Epidemiology and Genetics (DCEG); and Nonye Harvey, M.P.H., and Scott Rogers, M.P.H., Program
Analysts, Office of the EGRP Associate Director.
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