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1 Introduction and Background
Pages 19-56

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From page 19...
... For example, researchers do not have definitive knowledge of exactly where these various ovarian cancers originate and how they develop. Such unanswered questions have impeded progress in the prevention, early detection, treatment, and management of ovarian cancers.
From page 20...
... periods of remission. This report gives an overview of the state of the science in ovarian cancer research, highlights the major gaps in knowledge in that field, and provides recommendations that might help reduce the incidence of and morbidity and mortality from ovarian cancers by focusing on promising research themes and technologies that could advance risk prediction, early detection, comprehensive care, and cure.
From page 21...
... to use funds from Johanna's Law to perform a review of the state of the science in ovarian cancer.3 Study Charge In the fall of 2014, with support from the CDC, the Institute of Medicine (IOM) formed the Committee on the State of the Science in Ovarian Cancer Research to examine and summarize the state of the science in ovarian cancer research, to identify key gaps in the evidence base and challenges to addressing those gaps, and to consider opportunities for advancing ovarian cancer research (see Box 1-1)
From page 22...
... However, those research gaps and challenges that are common to all types of cancer research, or even to all health care research, are described as appropriate. For example, while the clinical trials system is extremely important to the ovarian cancer research enterprise, many of the outstanding
From page 23...
... One other major challenge to reviewing and summarizing the evidence base on ovarian cancer, particularly in summarizing the epidemiology by subtype, was the way that the grading, classification, and nomenclature for ovarian cancers have varied over the years. In order to guide its deliberative process, the committee chose to make recommendations about research gaps based on the continuum of cancer care (see Figure 1-1)
From page 24...
... 24 Continuum of Research to Advance Ovarian Cancer Prevention and Care Biology Innovative Research Designs Intervention Development Previvorship Survivorship Long-Term Survivorship Secondary Prevention & Diagnosis & Prevention & Early Treatment Monitoring for Detection Recurrence Management of Recurrent End-of-Life Care Disease Methods to Reduce Practice Related Disparities Supportive Care Research & Practice FIGURE 1-1  Framework for research in ovarian cancer. NOTE: Colored figures represent phases of the ovarian cancer care continuum where research can be focused.
From page 25...
... While the committee endeavored to focus on carcinomas wherever possible, there were times when that was not possible, and the terms "cancer" and "tumor" are used when appropriate. For example, many studies are based on ovarian cancers collectively and do not analyze data based on the subtypes.
From page 26...
... As with ovarian cancers in general, ovarian carcinomas are quite heterogeneous and come in a variety of different tumor types (see Figure 1-2)
From page 27...
... . Over the past several years, researchers have developed a streamlined classification scheme in which the majority of ovarian carcinomas can be divided into five types: 1.
From page 28...
... However, given the typical course of initial remission and subsequent recurrence for women with ovarian cancer, the 5-year survival metric may not reflect the overall disease course. At advanced stages, MCs and CCCs in particular have poorer prognoses and survival rates than other carcinoma subtypes (Mackay et al., 2010)
From page 29...
... However, the decline in mortality is relatively small when compared to reductions in death rates achieved for most other female gynecological cancers and for breast cancer in women. For example, the death rate from breast cancer fell by one-third between 1975 and 2012, from 31.4 deaths per 100,000 women to 21.3 deaths per 100,000, and the death rate from cervical cancer dropped by more than half during that same period, from 5.6 deaths per 100,000 women to 2.3 deaths per 100,000.
From page 30...
... . Survival is lowest among women who receive an unstaged ovarian cancer diagnosis (22.9 percent)
From page 31...
... women diagnosed with ovarian cancer, 2003–2009. SOURCE: Howlader et al., 2015.
From page 32...
... . From 2008 to 2012, nearly 88 percent of all new cases of ovarian cancer occurred among women ages 45 and older, with 69 percent of cases among women ages 55 and older, and the average age at diagnosis was 63 years.
From page 33...
... (per 100,000) 2012 FIGURE 1-9  Trends in age-adjusted death rates from ovarian cancer per 100,000 women in the United States by age group, 1975–2012.
From page 34...
... A particularly dramatic contrast can be seen between black and Asian/Pacific Islander women. While the two groups are similar in having low incidence rates, black women have the second-highest mortality rates and the lowest survival rates, while Asian/Pacific Islanders have the lowest mortality and the highest survival rates.
From page 35...
... Historical trends also show considerable variations by race. Between 2003 and 2012, mortality rates decreased significantly among whites and Hispanics, while declines in mortality among blacks, Asian/Pacific Island FIGURE 1-11  Age-specific incidence rates of ovarian cancer per 100,000 women in the United States by race/ethnicity and age at diagnosis, 2008–2012.
From page 36...
... . Furthermore, although black women had higher rates of survival compared to white women and to women overall in 1975, by the mid-1980s survival rates had begun to reverse, such that black women now have lower survival rates than white women and women of all races overall even despite gains in survival among blacks in the 1990s (ACS, 2015)
From page 37...
... The research is sometimes focused on ovarian cancers exclusively, but it sometimes looks at broader populations (e.g., women with gynecologic cancers)
From page 38...
... , an international classification system used by cancer researchers to compare research portfolios. The CSO consists of seven broad areas of interest: 1.
From page 39...
... The NCI is involved in ovarian cancer research in a variety of other ways. For example, the Clinical Proteomic Tumor Analysis Consortium (CPTAC)
From page 40...
... SOURCE: DoD, 2015b. Overall, the NCI supported $100.6 million in research9 related to ovarian cancer in FY 2013 while providing $559.2 million for breast cancer research, $63.4 million for cervical cancer research, and $17.8 million for endometrial cancer research (NCI, 2015g)
From page 41...
... Private Stakeholders A wide variety of private stakeholders are engaged in ovarian cancer research, including professional societies, advocacy organizations, women's health groups, and disease-specific foundations. In some cases, the organization specifically focuses on ovarian cancer and ovarian cancer research.
From page 42...
... . • The Ovarian Cancer Research Fund (OCRF)
From page 43...
... . The Role of Advocacy in Ovarian Cancer Research Advocacy has positively affected ovarian cancer research, public knowledge, and awareness.
From page 44...
... Furthermore, Congress has appropriated funds for ovarian cancer research and education programs since FY 1997. The establishment and unified efforts of national advocacy organizations are partially responsible for the significant funding increases in the intervening years (Temple, 2002)
From page 45...
... The Role of Consortia and Collaboration in Ovarian Cancer Research Because of the relative rarity of ovarian cancers, especially when subdivided according to subtypes, collaborative research efforts are necessary in order to collect sufficient data for statistically significant results. Many consortia and multisite studies have evolved to promote the sharing of biospecimens, clinical data, and epidemiologic data in order to ensure sufficient sample sizes in studies.
From page 46...
... . This reorganization consolidated nine cooperative groups into five new groups: • The Alliance for Clinical Trials in Oncology; • The ECOG-ACRIN Cancer Research Group (a merger of two cooperative groups: the Eastern Cooperative Oncology Group and the American College of Radiology Imaging Network)
From page 47...
... recommended the development of tools to identify the women who would benefit most from breast cancer screening based on "individually tailored risk prediction techniques that integrate biologic and other risk factors." The report also called for the development of tools that "facilitate communication regarding breast cancer risk to the public and to health care providers." In addition, the report called for more research on breast cancer screening and detection technologies, including research on various aspects of technology adoption (e.g., monitoring the use of technology in clinical practice)
From page 48...
... Clinical Trials The 2005 IOM report on breast cancer detection called for public health campaigns and for improved information and communication about the value of participation in clinical trials (including the participation of healthy individuals)
From page 49...
... called for actions to raise awareness about the needs of cancer survivors, including the establishment of cancer survivorship as a distinct phase of cancer care. In 2008, the IOM report Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs (IOM, 2008)
From page 50...
... OVERVIEW OF THE REPORT This chapter has provided an overview of the study charge and the committee's approach to its work. It has also provided an introduction to the challenges in ovarian cancer research, to defining and classifying ovarian cancers, to the patterns and demographics of the disease, and to the landscape of stakeholders in ovarian cancer research.
From page 51...
... The chapter discusses the research base for the unique issues of survivorship and management for women with ovarian cancer and their families, including managing the physical side effects of treatment, addressing unique psychosocial impacts, engaging women in their own self-care, and addressing end-of-life concerns. Chapter 6 summarizes the findings and conclusions of the previous chapters in order to provide a cohesive set of recommendations for prioritizing research on ovarian cancers in such a way as to have the greatest impact on reducing morbidity and mortality from the disease.
From page 52...
... Swenerton, and Cheryl Brown Ovarian Cancer Outcomes Unit of the British Columbia Cancer Agency.
From page 53...
... 2005. Saving women's lives: Strategies for improving breast cancer detection and di agnosis: A Breast Cancer Research Foundation and Institute of Medicine symposium.
From page 54...
... 2015f. An overview of NCI's National Clinical Trials Network.
From page 55...
... . OCRF (Ovarian Cancer Research Fund)
From page 56...
... 2015. SU2C-ovarian cancer research fund-ovarian cancer na tional alliance-national ovarian cancer coalition dream team: DNA repair therapies for ovarian cancer.


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