EGRP Hosts Workshop on Understudied Rare Cancers
Appendices:
Cancer Site Working Group Report: Brain and Eye Cancer
Chair: Melissa L. Bondy, Ph.D.;
Co-Chair: Daniela Seminara, Ph.D.
Discussion Questions:
a) What is the state of the science—what do we know?
Much descriptive epidemiology is available for brain and eye cancer, including
information on sex, age, and race differences. Several important scientific
advances have been made in brain cancer research since 2000, including evidence
for a connection with immunologic factors, studies of angiogenesis, identification
of molecular markers, and the role of 1p/19q deletions in oligodendromas.
However, there is still a great deal of uncertainty about the factors causing
brain tumors. Progress has not been as fast as hoped, partially because most
studies thus far have included only small sample sizes.
b) What are the scientific gaps—what do we not know?
The working group came up with a long list of knowledge gaps, including:
- Problems with molecular and histological classification and unknown
effects of misclassification
- Unknown role of the blood-brain barrier
- Lack of information about latency
periods
- Lack of information about indicators such as epilepsy
- Lack of animal
models with which to study exposures
- Need for better measures of and biomarkers
for exposures
- Lack of imaging and biomarkers for early and differential
diagnoses
- No genes identified yet for familial predispositions
- Lack of understanding
of brain tumor progression and pathways at the molecular level.
c) What obstacles (scientific, infrastructure, technical) impede progress,
and what needs to be done to remove the obstacles? Are there solutions to
some of these problems that work?
The working group identified six major areas that impede brain cancer research:
- Biospecimens—lack of normal tissue and cerebrospinal fluid (CSF)
banks and access to brain tumor samples. These problems might be solved
by creating CSF repositories, brain tumor tissue banks, autopsy brain banks,
or by using discarded Guthrie cards.
- Data quality—lack of early exposure
data, which could be solved by familial studies and registries.
- Ascertainment—rapid
mortality in some tumor types leads to bias in data collection. This could
be avoided with ultra-rapid ascertainment and reporting and by utilizing
the cancer registries.
- HIPAA and confidentiality—impedes sharing
of biospecimens and data. Master biospecimen sharing agreements among multiple
institutions could solve this problem.
- Collaboration—competition
for funding and publications impede collaborative studies in the United
States, while differences in ownership, privacy, and healthcare structures
impede international collaborations. These problems could be eased by increasing
funding for consortia and enhancing the international brain tumors epidemiology
consortium.
- Communication—lack of communication could be eased by
Web portals and a semi-private database for use by physicians and scientists.
d) What expertise, disciplines, and linkages do we need to “bring
to the table” to enhance progress?
The working group listed:
- Neurodevelopmental scientists
- Cancer, neuro-, and nutritional epidemiologists
- Immunologists
- Infectious disease experts
- Industrial hygiene experts
- Radiation and environmental scientists
- Neurologists and neurological
surgeons
- Physicians, including hematologists
- Communications and IT staff
- Cancer advocates
- Geriatrics experts
- Genomicists
- Molecular and cancer biologists
- Biostatisticians and bioinformaticians.
e) What are the partnering opportunities with other DCCPS programs?
The working group mentioned a SEER project in which samples and data from
discard repositories are made available to the general scientific community.
Members also suggested collaborations among the different Institutes. Researchers
could also take advantage of NCI cooperative groups such as the HMO Cancer
Research Network (CRN) and the Mouse Model Consortium. (The Mouse Model Consortium
is funded by NCI, but it is not a DCCPS program.)
The group highlighted technology integration as a priority for action because
microarrays, proteomics, and methylation studies have been used successfully
in other cancers.
Cancer Site Working Group Report: Endometrial Cancer
Chair: Pamela L. Horn-Ross, Ph.D.;
Co-Chair: Virginia W. Hartmuller, Ph.D.,
R.D.
Discussion Questions:
a) What is the state of the science—what do we know?
Endometrial cancer rates are highest in Caucasian women (26 per 100,000)
and lower in other groups (17 per 100,000), and recent observations suggest
increasing rates in African-American women. The 5-year relative survival
is substantially higher in Caucasian women (87%) compared with African-American
women (61%). Primary risk factors include obesity and hormone therapy (HT),
particularly estrogen-only therapy. The “unopposed estrogen hypothesis” explains
a portion of the relationship between obesity and endometrial cancer.
b) What are the scientific gaps—what do we not know?
The working group came up with a long list of knowledge gaps, including:
- Role of obesity, body fat distribution, metabolic syndrome, and hormone
and insulin levels
- Role of inflammatory, immune, and DNA repair mechanisms
- Effects of plant
foods
- Effects of NSAIDS and other pharmaceuticals
- Clarified role of continuous
combined HRT
- Genetic factors and the role of gene-environment interactions
- Differences
in risk factors and mechanisms by histologic type
- Racial/ethnic differences
in risk factors
- Biomarkers for endometrial cancer development that might
serve as prevention and intervention targets
- Factors influencing survival
following endometrial cancer diagnosis
- Factors influencing endometrial
cancer metastasis
- Challenges with pathology and classification.
c) What obstacles (scientific, infrastructure, technical) impede progress,
and what needs to be done to remove the obstacles? Are there solutions to
some of these problems that work?
The working group identified scientific, infrastructure, and technical obstacles:
- Scientific obstacles included a lack of better histological classifications;
small sample sizes in individual studies; need to address multiple factors,
pathways, and mechanisms simultaneously; need for biomarkers; and the need
for bioinformatics to synthesize large amounts of data. The problems could
be addressed through transdisciplinary, multicenter, and/or consortial
studies. Partnership with the established Breast Cancer Family Registry
(B-CFR) can provide guidance in setting up a consortium for endometrial
cancer. Partnering with NAACCR and pathologists can be instrumental in
improving the uniformity of histologic classification.
- The major infrastructure
problems were the need for initial funding to establish consortia, as well
as identification of leaders and inclusion of junior investigators. It
was suggested that DCCPS could help provide this support with new funding
mechanisms (e.g., consortia planning grants), and provide logistical support
for emerging consortia, including maintenance of a database and tissue
archive. Identification of community-based advocates and foundations interested
in endometrial cancer could potentially provide funding opportunities.
- The
technical obstacles also included budgetary concerns such as the lack of
appropriate consortium funding mechanisms, lack of funding for major instruments,
and standard NCI budget cuts on all grants. Data issues included problems
with HIPAA, with maintaining uniformity, and lack of genotyping platforms.
d) What expertise, disciplines, and linkages do we need to “bring
to the table” to enhance progress?
The list included:
- Epidemiology, genetics, molecular biology, biochemistry, pathology,
surgical oncology, gynecology, biostatistics, bioinformatics, nutritionists,
analytic chemists, biologists, behavioral scientists, endocrinologists,
marketing, food companies
- High through-put genetic technology
- Laboratory resources for the collection,
processing, and storage of biospecimens
- Cancer registries.
e) What are the partnering opportunities with other DCCPS programs?
The working group suggested that NCI’s Cancer Information Service
(CIS) could help with minority recruitment. Corporate partnerships might
be sought to help fund consortium meetings. The DCCPS-funded HMO Cancer Research
Network (CRN), DCCPS Applied Research Program (ARP), and other databases
could also be pressed into service for endometrial cancer research.
This group also suggested the following major priorities for action:
- Establish endometrial cancer consortia and identify leadership
- Establish
ground rules (leadership and membership roles, authorship, publications)
- Identify collaborators in the United States and Europe
- Establish a mission
statement around priorities (in-person meetings would be vital in successfully
and efficiently accomplishing this)
- Partner with breast/prostate consortia
to learn from their successes/failures
- Determine scope, including single
vs. dual consortia with case-control and cohort studies, and include survivorship
issues
- Identify outside funding opportunities
- Include junior investigators.
Cancer Site Working Group Report: Esophageal, Liver, Stomach, and Renal
Cancer
Chairs: Marilie D. Gammon, Ph.D., and Alexander S. Parker, Ph.D.;
Co-Chair: Mukesh Verma, Ph.D.
Discussion Questions:
a) What is the state of the science—what do we know?
The incidences of renal and liver cancers are increasing, while the incidence
of gastric cancer is declining in the United States. However, gastric cancer
remains high elsewhere in the world. Obesity is a risk factor in all of these
cancers. Other risk factors include smoking and hypertension for renal cancer;
hepatitis viruses B and C and alcohol for liver cancer; tobacco, alcohol,
and low fruit and vegetable intake for esophageal cancer; and H. pylori infection,
nitrosamines, and smoking for gastric cancers.
b) What are the scientific gaps—what do we not know?
The working group defined the following knowledge gaps:
- Mechanisms linking these cancers with known risk factors, including
viruses
- Other risk factors including genetic susceptibility
- Reasons for racial,
socioeconomic, and gender differences
- Need for better detection and improved
treatments
- Prognostic concerns
c) What obstacles (scientific, infrastructure, technical) impede progress,
and what needs to be done to remove the obstacles? Are there solutions to
some of these problems that work?
The working group identified data collection as a special challenge in these
rare cancers, resulting in high costs and an underappreciation of the difficulties
by others in the scientific community. There are also problems translating
study results from international populations to the United States and attracting
good new investigators. The solutions suggested were to establish a rare
tumor study section as well as specific RFAs. Members also suggested special
considerations for new investigators in the review process.
d) What expertise, disciplines, and linkages do we need to “bring
to the table” to enhance progress?
The working group suggested epidemiologists, geneticists, molecular biologists,
biochemists, pathologists, clinicians, bioinformaticians, statisticians,
behavioral biologists, health disparities researchers, and exposure assessment
experts. Members also emphasized a need for cross-training at the junior
level.
e) What are the partnering opportunities with other DCCPS programs?
Potential partners include the Epidemiology and Genetics Research Program
(EGRP), SEER Program and Cancer Statistics Branch of the Surveillance Research
Program (SRP), Applied Research Program (ARP); and Office of Cancer Survivorship
(OCS), and collaborations with intramural NCI scientists.
This working group identified three main priorities for further action:
find NCI scientists to act as partners, get the main players together face-to-face
at a meeting to begin forming a consortium, and send a message to NCI indicating
the need for special consideration for rare tumor proposals at review time.
Cancer Site Working Group Report: Head and Neck Cancer
Chair: Qingyi Wei, M.D., Ph.D.;
Co-Chair: Deborah M. Winn, Ph.D.
Discussion Questions:
a) What is the state of the science—what do we know?
The existing head and neck consortium has brought together more than 10,000
cases and 10,000 controls for pooled analysis. This analysis is considering
risk factors such as occupation and the etiology of head and neck cancer
among non-tobacco users and alcohol abstainers. The consortium will also
look at mechanistic factors such as the influence of DNA repair genes, virus
infections (such as human papillomavirus (HPV)), and associations with single
nucleotide polymorphisms (SNPs). HPV infection has been linked to certain
head and neck cancers, such as tonsillar cancer.
b) What are the scientific gaps—what do we not know?
The working group defined the following knowledge gaps:
- Lack of clear definitions and classifications
- Small sample sizes
- Need for biomarkers for prognosis and diagnosis
- Follow up and treatment
issues—do we overtreat?
- Identification of SNPs and other genetic
markers
- Reasons for variation by geographic regions
- Contribution of lifestyle
factors
- Environmental factors
- Role of HPV in etiology and prognosis
- Lack of understanding of gene/environment
interactions.
c) What obstacles (scientific, infrastructure, technical) impede progress,
and what needs to be done to remove the obstacles? Are there solutions to
some of these problems that work?
Like many of the working groups, this one identified both scientific and
technical/infrastructure obstacles:
- Scientifically, the heterogeneity of these tumors prevents the detection
of associations for head and neck cancer anatomic subsites, a problem that
could be solved with better classification methods. A common protocol is
also needed, with common controls and sampling methods. The treatment issues
mentioned above could be approached by starting with small-scale, simplified
studies and moving to standardized consortial studies.
- Definitions and
classification were seen as a technical problem as well because different
registries are using different standards. Standard databases, classifications,
and protocols would help ease this problem. The group also suggested that
better coordination of studies would improve access to specimens, while
the formation of consortia would increase sample sizes. These efforts would
be improved by building centralized Web portals that contained study protocols
and questionnaires. Ready availability of standardized tools might also
allow consortia to respond more quickly to changes in the cancer field.
d) What expertise, disciplines, and linkages do we need to “bring
to the table” to enhance progress?
DCCPS partnerships were not specifically addressed by this group.
e) What are the partnering opportunities with other DCCPS programs?
The working group singled out the Office of Cancer Survivorship (OCS) and
SEER Program. It also suggested caBIG, SPORE-type programs, and collaborations
with intramural NCI scientists.
This working group identified a number of priorities for further action:
- Develop working groups to focus on standardized definitions, protocols,
and follow up
- Facilitate interactions among existing consortia
- Develop new collaborative
projects and support their infrastructures
- Initiate studies in diverse
and international populations
- Investigate understudied lifestyle and genetic
risk factors
- Gather information on HPV status of tumors and
- Better understand genetic
susceptibility.
Cancer Site Working Group Report: Hodgkin’s Disease and Leukemia
Moderators: Sara S. Strom, Ph.D.;
Co-Chair: Isis S. Mikhail, M.D., M.P.H.,
Dr.P.H.
Discussion Questions:
a) What is the state of the science—what do we know?
For Hodgkin’s disease, risk factors include Epstein-Barr Virus (EBV)
and socioeconomic status (SES). This disease also shows a bimodal age distribution,
and gender and race differences.
Leukemias are a heterogeneous group for which there is scarce data. A few
risk factors are known for certain types, for example, smoking, and chemical
and occupational exposures. Leukemias also show gender differences.
b) What are the scientific gaps—what do we not know?
Hodgkin’s disease:
- Many hypotheses to be studied
- Need to better understand biology of EBV
- Heterogeneity of exposures
could be addressed by studies in countries with differing SES
- Insufficient
data on women due to very low incidence.
Leukemias:
- Insufficient research in this area—“It is all gaps.”
c) What obstacles (scientific, infrastructure, technical) impede progress,
and what needs to be done to remove the obstacles? Are there solutions to
some of these problems that work?
These diseases share many of the same obstacles, according to the working
group. Research on both suffers from a scarcity of patients, which could
be remedied by inter-institutional and international collaborations. These
collaborations should include clinical, epidemiological, and basic researchers.
Such collaborations could be facilitated by funding mechanisms that promote
multiple grant collaborations and that recognize multiple principal investigators
on single grants.
Funding is also an issue for both diseases. This could be eased by increasing
Federal funding, and enlisting the help of patient advocacy groups and foundations.
There is a lack of standardized methodologies—for example, control
selection and data collection instruments. Collaborations would also be aided
by the development of common methodologies. Certain leukemias also present
an ascertainment obstacle due to their rapid mortality rates. This problem
could be solved by rapid patient identification and enrollment at the time
of diagnosis.
d) What expertise, disciplines, and linkages do we need to “bring
to the table” to enhance progress?
For Hodgkin’s disease, a multidisciplinary team should include virologists,
molecular biologists, B-cell biologists, geneticists, immunologists, hematologists,
and epidemiologists. For leukemias, the team should include hematologists,
epidemiologists, molecular biologists, geneticists, and immunologists.
e) What are the partnering opportunities with other DCCPS programs?
The programs most relevant to these diseases include the Epidemiology and
Genetics Research Program (EGRP) and its Analytic Epidemiology Research Branch
(AERB), Applied Research Program (ARP), and the Surveillance Research Program
(SRP).
This working group identified a number of priorities for further action:
For Hodgkin’s disease:
- Establish an independent Hodgkin’s group
separate from the InterLymph consortium but linked to it
- Build on the existing
InterLymph by taking advantage of existing committees
- Identify researchers
to be members of the group
- Approach InterLymph leadership to propose a
Hodgkin’s disease
group and work out logistics
- Create a RFA for rare cancers (urgent).
For leukemias:
- Identify and invite interdisciplinary researchers to be part
of a brainstorming group
- Build connections with cancer survivorship groups
and consumer advocates
- Approach private foundations to initiate communications
and provide support
- Create a RFA for rare cancers (urgent).
Cancer Site Working Group Report: Non-Hodgkin’s Lymphoma, Myeloma,
and Kaposi’s Sarcoma
Moderators: James R. Cerhan, M.D., Ph.D., and Vaurice Starks, B.S.
Discussion Questions:
a) What is the state of the science—what do we know?
This working group defined a number of areas of knowledge:
- Pathobiology—In non-Hodgkin’s lymphoma (NHL), malignancy
originates mainly in B cells, sometimes in T cells, and rarely in other
primary immune cells. Malignancy arises from molecular mistakes resulting
from normal physiological responses. In multiple myeloma (MM), MGUS is
a known precursor lesion, and cytokines and growth factors appear to be
very important. Kaposi sarcoma (KS) is characterized by the presence of
HHV-8/KSHV virus in all cases. KSHV has a latency period and codes for
several gene products that play a role in cellular transformation.
- Classification—WHO
classification system (developed to incorporate the revolution in our understanding
of immunology) appears to be robust and reproducible. There is some evidence
for specific risk factors in specific NHL subtypes. MM has a standard clinical
definition. KS is well-classified and often clonal.
- Descriptive epidemiology—NHL
rates are higher in men than women (a notable exception is follicular NHL)
and in Caucasians relative to other racial/ethnic groups. Incidence and
mortality rates have increased dramatically since the 1950s. NHL subtypes
have different descriptive epidemiologies. For MM, incidence rates are
higher in men and in African Americans and Hispanics. Classic KS shows
male predominance while HIV-associated KS does not.
- Genetic risk factors—NHL
shows modest familial influence; the others have limited data in this area.
- Environmental risk factors—For NHL, risk factors are EBV, immunosuppression,
local inflammation/chronic antigenic stimulation, and HIV. MM is associated
with high-dose ionizing radiation. KS is associated with HHV-8/KSHV and immunosuppression.
b) What are the scientific gaps—what do we not know?
Non-Hodgkin’s lymphoma
- Need to define factors that contribute to the
molecular errors that characterize different NHL subtypes
- Many WHO-defined
NHL subtypes remain heterogenous at the molecular level
- Uncertain how histologic
subtypes relate to etiology and the best groupings of subtypes for etiologic
studies
- Cause of the slowing in the rate of increase in the incidence of
NHL not fully understood
- Changing classifications make historical trend
and risk factor data difficult to interpret
- Role of EBV and other viruses
in NHL etiology; other mechanisms by which EBV (and other viruses) might
influence lymphomagenesis; differences in risk factors for EBV-positive
versus EBV-negative lymphomas
- Role of immune function in NHL in immunocompetent
persons
- Role of immune function in HIV+ patients who do not develop NHL
- Is there
a precursor state that leads to NHL (analogous to the MGUS to MM paradigm).
Multiple myeloma
- Molecular events that cause the transition from MGUS to
MM
- Contributions of SES, diet, lifestyle, and genetics to risk
- Why is MGUS
more prevalent in non-Caucasian populations?
Kaposi’s sarcoma
- Molecular events leading from KSHV infection to KS
- How does KSHV remain
latent and what activates it?
- Need to identify the many gene products involved
in KSHV pathogenesis and understand how KSHV infection can lead to cellular
transformation
- What is the immune response to KSHV?
c) What obstacles (scientific, infrastructure, technical) impede progress,
and what needs to be done to remove the obstacles? Are there solutions to
some of these problems that work?
The working group identified a number of scientific obstacles and solutions
for each cancer. For NHL and MM, the basic immunology and virology needs
to be translated into valid, reliable, robust, and cost-effective measurements
for use in epidemiological studies. Exposure assessments for both cancers
need to be better developed and standardized. The molecular classification
of NHL is incomplete. MM suffers from a lack of funding. KS needs more studies
in populations with a high prevalence of KS, which are mostly in developing
countries.
Technical and infrastructure needs were many and varied. For NHL, multicenter
studies are needed to obtain sufficient sample sizes, particularly to address
rarer subtypes. There is a need for prediagnostic specimens. Central pathology
review and classification is difficult and expensive, and needs to be standardized.
Money is needed to develop infrastructure such as control registries so that
population-based controls can be obtained more easily. Access to minority
populations is needed.
For MM, the use of prediagnostic specimens and cohort studies requires a
very large study size or very long follow up to accrue sufficient cases.
Case-control studies are made difficult by high case fatality. There is a
need for centralized communication and resources, perhaps by Web portals.
MM researchers need better access to minority and non-Western populations.
The group suggested that the SPOREs could increase their emphasis on epidemiological
projects to alleviate some of these problems.
For KS, there is a lack of research infrastructure in the developing countries
where it is most prevalent. This could be alleviated by establishing functional
research sites in those countries. These centers could also attract and train
needed international collaborators. Another suggestion was to use AIDS cohort
studies as a resource for KS research.
For all cancers, there are multiple obstacles to consortium participation
(academic recognition; authorship; meaning of independence; indirect costs;
review at study section). Funding mechanisms are also problematic (R03 too
small; R01 size not flexible enough). Few (or almost no) studies result in
slow follow up of promising leads (literature evolves slowly).
d) What expertise, disciplines, and linkages do we need to “bring
to the table” to enhance progress?
For all cancers, immunology (better measures of immune function), virology/microbiology
(pathogen identification; new models of how pathogens lead to cancer), pathology
(classification), molecular biology (relevant pathways), genetics (host,
viral, and tumor), epidemiology, bioinformatics, and biostatistics (analysis
of complex pathways and interactions).
e) What are the partnering opportunities with other DCCPS programs?
The following suggestions were made:
- Support of consortia (meetings, Web
sites, communications, etc.)—for
example, InterLymph model
- Intramural and extramural
- Survivorship research (add on to cohort and
case-control etiology studies)
- Diagnostics
- SPOREs
- CaBIG
The working group identified a large number of action items and priorities
for each disease:
Non-Hodgkin’s lymphoma
- Maintain InterLymph by adding resources, easing
review concerns, holding targeted workshops, and increasing researchers’ incentives
to participate
- Maintain funding of individual R01s as incubators of new
discoveries that can be validated in consortia
- Obtain long-term support
for biospecimen repositories and databanks
- Produce standardized definitions
for distinct lymphoid malignancies
- Maintain support for SEER and epidemiology/population
based projects in SPOREs
- Increase R03 funding to $75,000 per year and increase
use of R21 mechanism
- Incorporate new biology into population studies to
address interactions of infectious agents and immune function.
Multiple myeloma
- Develop an MM consortium, possibly as a working group linked
to InterLymph
- Strengthen existing multidisciplinary collaborative groups
- Use pancreatic
cancer model to jump-start myeloma funding
- Investigate understudied lifestyle
and genetic risk factors.
Kaposi’s sarcoma
- Develop a KS consortium
- Establish international research sites, fund
and train collaborators
- Increase collaboration with AIDS malignancies consortium
- Establish cancer
registries in developing countries
- Develop working groups focusing on different
areas such as epidemiology, animal models, and treatment.
General (all three types)
- Have NCI coordinate/facilitate access to prediagnostic
specimens from cohort studies
- Support infrastructure for consortium (leadership,
communication, working groups, Web sites; meetings, etc.) and provide incentives
for participation
- Improve consortia review by including transdisciplinary
researchers on study sections
- Support studies in diverse and international
populations
- Facilitate career development of junior scientists
- Support long-term
storage of valuable samples
- Encourage research on the epidemiology of survivorship
- Support whole
genome studies and other new technologies as appropriate
- Encourage novel
study designs
- Increase awareness of epidemiological research.
Cancer Site Working Group Report: Ovarian and Testicular Cancer Working
Group
Moderators: Roberta Ness, M.D., M.P.H., and J. Fernando Arena, M.D., Ph.D.
Discussion Questions:
a) What is the state of the science—what do we know?
The working group concentrated primarily on ovarian cancer, which shows
significant heterogeneity of tumors. There are three well-recognized protective
effects: child bearing, breastfeeding, and oral contraceptive use. The incidence
is approximately 15 per 100,000 and 1.5 percent of women will develop ovarian
cancer sometime in their lifetime. There is virtually no cancer under the
age 40, and it is less common in African Americans. The presence of BRCA1
and 2 increases the risk of ovarian cancers, and BRCA carriers generally
have a lower age of incidence.
b) What are the scientific gaps—what do we not know?
- More studies needed on pregnancy outcomes and possible effects on
ovarian cancer, for example, the role of preeclampsia
- Lack of international
studies comparing rates in other countries
- Need to start testing current
hypotheses by looking at biomarkers using cohorts
- Need to consider testing
some biomarkers as markers of diagnosis
- Better understanding of the biology
of ovulation
- Better integration of animal models and epidemiologic observations
- Risk
stratification (are there strata of women that would benefit from known
preventive strategies?)
- Latency periods (are pre- and post-menopausal cancers
the same or different?)
- Correlation between inflammatory markers and ovarian
cancer
- Need to understand the cellular mechanisms of ovarian cancer
- Need for
studies to understand the North-South gradient for ovarian cancer
- Disease
outcome, response to treatment, and survivorship by race.
c) What obstacles (scientific, infrastructure, technical) impede progress,
and what needs to be done to remove the obstacles? Are there solutions to
some of these problems that work?
This working group concentrated primarily on the solutions, suggesting that
an ovarian cancer consortium be formed. The consortium could perform case-control
studies to identify genetic polymorphisms, and cohort studies to identify
biomarkers and other prognostic factors, and could pool data and resources.
The group suggested using the template of the brain consortium and taking
advantage of international studies and active survivor groups. Inclusion
of multidisciplinary investigators would promote understanding of the biology
of infertility and ovarian cancer.
The group had several other proposed solutions to improve study of ovarian
cancer. Members suggested leveraging ongoing clinical trials to gather epidemiological
data and using cohorts from other diseases, such as cardiovascular disease.
Case-control studies could be used for pooling to examine gene-gene and gene-environment
interactions; whereas cohort pooling would be best used for the study of
biomarkers. Common data elements and common histologic definitions would
also be useful. This group also suggested special study sections for rare
cancers.
d) What expertise, disciplines, and linkages do we need to “bring
to the table” to enhance progress?
The working group suggested multidisciplinary teams including pathologists,
cellular and molecular biologists, epidemiologists, geneticists, immunologists,
gynecologists, and oncologists.
e) What are the partnering opportunities with other DCCPS programs?
DCCPS partnerships were not specifically addressed by this group.
The working group identified priorities for both ovarian and testicular
cancer:
Ovarian cancer
- Produce a standardized core questionnaire
- Investigate molecular profiling
of tumors to complement histology
- Identify genetic polymorphisms in key
pathways, such as hormonal and inflammatory
- Study the biology of ovulation
- Pool cohort studies and look for biomarkers
that are related to current hypotheses
- Establish trans-division and trans-institute
collaborations for use of various cohorts
- Access the NCI-funded Gynecology
Oncology Group for clinical trials and other resources
- Obtain funding for
consortium building.
Testicular cancer
- Hold meeting next spring in Bethesda and identify relevant
investigators
- Find ways to get larger sample sizes
- Establish type of study design
to be used
- Partner with other studies, such as prostate cancer, to get
African cases
- Increase standardization of studies
- Collect information about existing
studies
- Examine the role of hormones and quality-of-life issues in survivors
(what are the later-life effects of different treatments?).
Working Group Participants List
Brain and Eye Cancer Working Group
Melissa Bondy, University of Texas M.D. Anderson Cancer Center– Chair
Daniela Seminara, National Cancer Institute – Co-Chair
Emily Dowling, National Cancer Institute – Recorder
Julie Buring, Harvard Medical School
Dominique Michaud, Harvard School of Public Health
John Neuberger, University of Kansas School of Medicine
Judith Schwartzbaum, Ohio State University
Maria Schymura, New York State Cancer Registry
Margaret Wrensch, University of California, San Francisco
David Lee, Sylvester Comprehensive Cancer Center/University of Miami
Manuela Orjuela, Columbia University
James Fisher, Ohio State University
Dora Il'yasova, Duke University Medical Center
Colleen McLaughlin, New York State Department of Health
Peter Inskip, National Cancer Institute
Ania Pollack, University of Kansas School of Medicine
Michael Scheurer, University of Texas M.D. Anderson Cancer Center
Ben Hankey, National Cancer Institute
Endometrial Cancer Working Group
Pamela Horn-Ross, Northern California Cancer Center – Chair
Virginia Hartmuller, National Cancer Institute – Co-Chair
Nancy Emenaker, National Cancer Institute – Recorder
Chu Chen, Fred Hutchinson Cancer Research Center
Immaculata Devivo, Brigham and Women’s Hospital/Harvard Medical School
Anne Zeleniuch-Jacquotte, New York University School of Medicine
Jiali Han, Brigham and Women’s Hospital/Harvard Medical School
Holly Howe, North American Association of Central Cancer Registries
Susan Reed, Fred Hutchinson Cancer Research Center/University of Washington
Herbert Yu, Yale University School of Medicine
Dana Christo, Johns Hopkins Bloomberg School of Public Health
Jennifer Doherty, Fred Hutchinson Cancer Research Center
Monica McGrath, Brigham and Women’s Hospital/Harvard Medical School
Head and Neck Cancer Working Group
Qingyi Wei, University of Texas M.D. Anderson Cancer Center – Chair
Deborah Winn, National Cancer Institute – Co-Chair
Shannon Lynch, National Cancer Institute – Recorder
Gerry Funk, University of Iowa Hospitals and Clinics
Anna Giuliano, H. Lee Moffitt Cancer Center & Research Institute
Karl Kelsey, Harvard School of Public Health
Miriam Rosin, British Columbia Agency Cancer Research Centre
Elaine Smith, University of Iowa College of Public Health
Margaret Spitz, University of Texas M.D. Anderson Cancer Center
Yin Yao, Johns Hopkins University
John Lee, University of Iowa Hospitals and Clinics
Guojun Li, University of Texas M.D. Anderson Cancer Center
Sheila Zahm, National Cancer Institute
Heather Nelson, Harvard School of Public Health
Hodgkin’s Disease and Leukemia Working Group
Sara Strom, University of Texas M.D. Anderson Cancer Center – Chair
Isis Mikhail, National Cancer Institute – Co-Chair
Megan Stephan (contractor) – Recorder
Jonine Bernstein, Memorial Sloan-Kettering Cancer Center
Hoda Anton-Culver, University of California, Irvine
Elizabeth Corder, Duke University
Randa El-Zein, University of Texas M.D. Anderson Cancer Center
William Field, University of Iowa
Sally Glaser, Northern California Cancer Center
Thomas Mack, Norris Comprehensive Cancer Center, University of Southern California
Theresa Keegan, Northern California Cancer Center
Xiaomei Ma, Yale School of Medicine
Nancy Mueller, Harvard School of Public Health
Liver, Renal, Esophageal, and Stomach Cancer Working
Group
Marilie Gammon, University of North Carolina, Chapel Hill – Chair
Alexander Parker, Mayo Clinic College of Medicine – Chair
Mukesh Verma, National Cancer Institute – Co-Chair
Sheri Schully, National Cancer Institute – Recorder
Joe Patel, National Cancer Institute
Cheryl Marks, National Cancer Institute
Jay Choudhry, National Cancer Institute
Alison Evans, Fox Chase Cancer Center
Sherri Stuver, Boston University School of Public Health
Manuela Gago-Dominguez, Norris Comprehensive Cancer Center/University of
Southern California
Marsha Frazier, University of Texas M.D. Anderson Cancer Center
Jinyun Chen, University of Texas M.D. Anderson Cancer Center
Radoslav Goldman, Georgetown University
Karen Pawlish, New Jersey Department of Health and Senior Services
Kathryn McGlynn, National Cancer Institute
Leslie Bernstein, Norris Comprehensive Cancer Center/University of Southern
California
Catherine Hoyo, Duke University Medical Center
Jie Lin, University of Texas M.D. Anderson Cancer Center
Christian Abnet, National Cancer Institute
Non-Hodgkin’s Lymphoma, Myeloma, and Kaposi’s Sarcoma
Working Group
James R. Cerhan, Mayo Clinic College of Medicine – Chair
Vaurice Starks, National Cancer Institute – Co-Chair
Carmina Valle, National Cancer Institute – Recorder
Wendy Cozen, Keck School of Medicine, University of Southern California
Elizabeth Holly, University of Southern California, San Francisco
Francine Laden, Harvard School of Public Health
Otoniel Martinez-Maza, David Geffen School of Medicine, University of California
Kenneth Anderson, Dana-Farber Cancer Institute
Graham Colditz, Brigham and Women’s Hospital/Harvard Medical School
Charles Wood, Nebraska Center for Virology
Brenda Birmann, Harvard School of Public Health
Paige Bracci, University of California, San Francisco
Christine Skibola, University of California, Berkeley
Shumin Zhang, Brigham and Women’s Hospital/Harvard Medical School/Harvard
School of Public Health
Mulugeta Gebregziabher, University of Southern California
Dalsu Baris, National Cancer Institute
Jill MacKinnon, Sylvester Comprehensive Cancer Center/University of Miami
Ovarian and Testicular Cancer Working Group
Roberta Ness, University of Pittsburgh – Chair
Fernando Arena, National Cancer Institute – Co-Chair
Scott Rogers, National Cancer Institute – Recorder
Julia Rowland, National Cancer Institute
Daniel Cramer, Brigham and Women’s Hospital
Joanne Dorgan, Fox Chase Cancer Center
Susan Hankinson, Brigham and Women’s Hospital/Harvard School
Betsy Kohler, New Jersey Department of Health and Senior Services
Leigh Pearce, Norris Comprehensive Cancer Center/University of Southern California
Harvey Risch, Yale University School of Medicine
Joellen Schildkraut, Duke University Medical Center
Victoria Cortessis, University of California, Los Angeles
Stephen Schwartz, Fred Hutchinson Cancer Research Center
Julia Greer, University of Pittsburgh
Kathryn Terry, Brigham and Women’s Hospital
Russ Hauser, Harvard School of Public Health
Lynn Rosenberg, Boston University Medical Campus
Yawei Zhang, Yale University
Michael Thun, American Cancer Society
Anita Ambs, National Cancer Institute
Katherine McGlynn, National Cancer Institute
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