Appendices of the Second NCI Epidemiology Leadership Workshop: Understudied Rare Cancers

Appendices


Appendix A: 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:

  1. 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.
  2. Data quality—lack of early exposure data, which could be solved by familial studies and registries.
  3. 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.
  4. HIPAA and confidentiality—impedes sharing of biospecimens and data. Master biospecimen sharing agreements among multiple institutions could solve this problem.
  5. 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.
  6. 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.

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Appendix B: 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.

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Appendix C: 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.

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Appendix D: 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.

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Appendix E: 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).

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Appendix F: 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:

  1. 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.
  2. 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.
  3. 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.
  4. Genetic risk factors—NHL shows modest familial influence; the others have limited data in this area.
  5. 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, websites, 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.

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Appendix G: 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?).

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Appendix H: 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 &ndash ;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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