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Clinical and Behavioral Research

Clinical Outcomes Research, Genetic Epidemiology
 
Hereditary Breast Cancer and Novel Hispanic BRCA Mutations
We hypothesize that: 1) Using novel high-throughput technologies, a panel that includes the majority of recurrent BRCA mutations found in women of Hispanic ancestry to pre-screen high risk patient samples will demonstrate potential clinical utility and reduce overall genotyping cost, 2) Studying BRCA mutations from a consortium of high-risk clinics serving Hispanic populations, from published literature and public databases, and from additional population-based cohorts will enable relatively comprehensive characterization of the spectrum and prevalence of BRCA mutations associated with breast cancer in Hispanics, and 3) The characterization of the ancestral background of recurrent BRCA mutations will enhance the specificity and predictive value of our Hispanic mutation panel
 
Communication, Content & Impact of Genetics in Breast Cancer
Young women with breast cancer who carry a BRCA gene mutation are also at high risk for ovarian cancer. Due to inadequate screening and early detection tools, these women are recommended to have their ovaries removed upon completion of childbearing or no later than age 35-40. The purpose of this study, under the direction of Dr. Deborah MacDonald, is to explore psychosocial well-being (PSWB) issues related to this recommendation and facing loss of fertility and early menopause (Phase 1), and to develop and test a needs-based psychoeducational intervention to enhance the lives of ethnically diverse reproductive age BRCA+ women (Phase 2). We hypothesize that: (1) reproductive age BRCA+ women have psychoeducational support needs related to fertility and menopausal issues that can be effectively addressed by the intervention, and (2) that the intervention group will have fewer unmet PSWB needs compared to the control group. We aim to enroll at least 50% Latinas (at least half primarily Spanish-speaking) in each study phase. The study’s Latina bilingual/bicultural team member will allow participation by English or Spanish-speaking Latinas. A needs-oriented, effective, evidence-based, and easily disseminated intervention to promote PSWB in BRCA+ women will help fill a critical untapped gap in cancer prevention and control research that enhances the lives of these women. Findings may ultimately be applied to other breast cancer survivors facing premature loss of fertility or early menopause.
 
Factors Influencing Communication of Cancer Risk Information to Family Members Among Asian-Americans seen for Genetic Cancer Risk Assessment
Risk communication within families is important in cancer prevention and control yet little is known about the beliefs, practices, and barriers related to this communication among Asian-Americans seen for GCRA. This project, under the direction of Dr. Deborah MacDonald, was conducted to help address this data gap. Participants were Asians referred to our cancer genetic clinics in Southern California. The 298 respondents to our mailed survey represented various Asian ethnic groups, were mostly females (94%), between age 30-60 (83%), married/cohabitating (77%), highly educated (72%), had children (70%), had been diagnosed with breast cancer (78%), and underwent genetic testing (75%; 12% positive for hereditary cancer risk). Of these 298 individuals, 89% indicated that they had a duty to inform their relatives of cancer risk and 78% considered this to be strictly a personal (vs. healthcare provider) duty. Of 123 follow-up respondents, 80% reported informing at least one close relative of cancer risk post-GCRA, primarily sisters and daughters. Barriers to risk communication, primarily concern about upsetting relatives and loss of contact, were reported by 14%. There were no significant differences identified by ethnicity or other demographics or cancer history. These findings suggest that following genetic cancer risk assessment, most Asian-Americans execute their perceived duty to inform relatives of cancer risk with few barriers to this communication.
 
Community Outreach and Health Services Research
 
Promoting Participation in Cancer Risk Counseling for Underserved Latinas
The primary purpose of this project is to test the effectiveness of a pre-GCRA (genetic cancer risk assessment) telephone intervention for underserved Latinas at high risk for hereditary breast and ovarian cancer. We seek to determine if the culturally and linguistically appropriate intervention, which incorporates adaptive motivational interviewing (AMI), will improve the uptake, preparedness for, and effectiveness of GCRA with high-risk Latinas. We hypothesize that; 1) Relative to the control group, patients randomized to the AMI pre-GCRA intervention will demonstrate greater GCRA appointment adherence, preparedness, knowledge, and satisfaction with the GCRA consultation process and experience; 2) Relative to the control group, patients randomized to the AMI pre-GCRA intervention will experience a greater reduction in anxiety and increased personal control prior to and after GCRA, and demonstrate greater cancer genetics knowledge after GCRA.
 
IRIS for BRCA Carriers – Decision Support Tools
The aims of the project are to develop an Individualized Risk Information System (IRIS), composed of a predictive model and the visual display of its output, which will provide female breast cancer patients who have a deleterious BRCA mutation with information regarding the risk of additional primary cancers and outcomes of risk reduction treatment choices and then to pilot use of the Individualized Risk Information System in breast cancer patients undergoing BRCA mutation testing.
 
Ethical, Legal, and Social Implications in Society
 
Genetic Discrimination and Access to Cancer Genetics Care
We surveyed non-genetics clinicians to explore the extent to which potential knowledge gaps and/or opinions of cancer genetics, genetic discrimination, and protective laws influences cancer genetics referrals and consequently access to risk-appropriate cancer screening and prevention. Although 96% of responders viewed genetic testing as beneficial to their patients, 75% stated genetic testing is likely to be declined by patients due to fear of genetic discrimination. The majority did not know that federal law (HIPAA) prohibits health insurance discrimination in the group market on the basis of genetic test results (61%) or that California State law prevents genetic information from being used as a criterion for health insurance coverage decisions (67%). Results indicate knowledge gaps and misperceptions as possible barriers to referral for genetic cancer risk assessment. A proposal is pending to develop an education program for clinicians regarding cancer genetics and current, as well as future, genetic discrimination laws may help to promote access to appropriate care.
 
Education, Community Networks, and the Hereditary Cancer Registry
 
Community Cancer Genetics and Research Training
The goal of our project is to provide intensive professional training programs in clinical cancer genetics and research collaboration for community-based clinicians. Interest and active participation in the course by clinicians from distinct disciplines, as well as outcomes to date, indicate that the course is a practical, cost-effective and efficacious way to deliver interdisciplinary cancer genetics training and post-course clinical and research support to clinicians practicing cancer genetic in the community setting, where there is defined need for cancer risk assessment services. Web-conference and web board interfaces being refined through the project are being utilized by many of the clinicians trained. On a practical level, numerous course participants joined the City of Hope Hereditary Cancer Registry, creating a broad based high risk clinic research network as a community laboratory for genetic epidemiology and clinical outcomes research.
 
The Hereditary Cancer Research Registry (Molecular Genetic Studies in Cancer Patients and their Relatives; IRB #96144) is a prospective research registry protocol that was initiated at City of Hope in 1996 as a biospecimen repository with associated personal and family medical history, psycho-social and clinical follow-up data (e.g., screening and risk reduction behavior, risk communication) collection. The CCGCRN is a network of City of Hope-affiliated sites and allows patients with a personal or family history of cancer to participate in cancer genetics research. To date, the study has accrued over 10,000 participants with 4-generation family histories and banked biospecimens (including DNA, cryopreserved lymphocytes and/or lymphoblastoid cell lines, and more recently collections of plasma for proteomic studies; a subset have snap-frozen tumor tissue).
 

Clinical and Behavioral Research

Clinical and Behavioral Research

Clinical Outcomes Research, Genetic Epidemiology
 
Hereditary Breast Cancer and Novel Hispanic BRCA Mutations
We hypothesize that: 1) Using novel high-throughput technologies, a panel that includes the majority of recurrent BRCA mutations found in women of Hispanic ancestry to pre-screen high risk patient samples will demonstrate potential clinical utility and reduce overall genotyping cost, 2) Studying BRCA mutations from a consortium of high-risk clinics serving Hispanic populations, from published literature and public databases, and from additional population-based cohorts will enable relatively comprehensive characterization of the spectrum and prevalence of BRCA mutations associated with breast cancer in Hispanics, and 3) The characterization of the ancestral background of recurrent BRCA mutations will enhance the specificity and predictive value of our Hispanic mutation panel
 
Communication, Content & Impact of Genetics in Breast Cancer
Young women with breast cancer who carry a BRCA gene mutation are also at high risk for ovarian cancer. Due to inadequate screening and early detection tools, these women are recommended to have their ovaries removed upon completion of childbearing or no later than age 35-40. The purpose of this study, under the direction of Dr. Deborah MacDonald, is to explore psychosocial well-being (PSWB) issues related to this recommendation and facing loss of fertility and early menopause (Phase 1), and to develop and test a needs-based psychoeducational intervention to enhance the lives of ethnically diverse reproductive age BRCA+ women (Phase 2). We hypothesize that: (1) reproductive age BRCA+ women have psychoeducational support needs related to fertility and menopausal issues that can be effectively addressed by the intervention, and (2) that the intervention group will have fewer unmet PSWB needs compared to the control group. We aim to enroll at least 50% Latinas (at least half primarily Spanish-speaking) in each study phase. The study’s Latina bilingual/bicultural team member will allow participation by English or Spanish-speaking Latinas. A needs-oriented, effective, evidence-based, and easily disseminated intervention to promote PSWB in BRCA+ women will help fill a critical untapped gap in cancer prevention and control research that enhances the lives of these women. Findings may ultimately be applied to other breast cancer survivors facing premature loss of fertility or early menopause.
 
Factors Influencing Communication of Cancer Risk Information to Family Members Among Asian-Americans seen for Genetic Cancer Risk Assessment
Risk communication within families is important in cancer prevention and control yet little is known about the beliefs, practices, and barriers related to this communication among Asian-Americans seen for GCRA. This project, under the direction of Dr. Deborah MacDonald, was conducted to help address this data gap. Participants were Asians referred to our cancer genetic clinics in Southern California. The 298 respondents to our mailed survey represented various Asian ethnic groups, were mostly females (94%), between age 30-60 (83%), married/cohabitating (77%), highly educated (72%), had children (70%), had been diagnosed with breast cancer (78%), and underwent genetic testing (75%; 12% positive for hereditary cancer risk). Of these 298 individuals, 89% indicated that they had a duty to inform their relatives of cancer risk and 78% considered this to be strictly a personal (vs. healthcare provider) duty. Of 123 follow-up respondents, 80% reported informing at least one close relative of cancer risk post-GCRA, primarily sisters and daughters. Barriers to risk communication, primarily concern about upsetting relatives and loss of contact, were reported by 14%. There were no significant differences identified by ethnicity or other demographics or cancer history. These findings suggest that following genetic cancer risk assessment, most Asian-Americans execute their perceived duty to inform relatives of cancer risk with few barriers to this communication.
 
Community Outreach and Health Services Research
 
Promoting Participation in Cancer Risk Counseling for Underserved Latinas
The primary purpose of this project is to test the effectiveness of a pre-GCRA (genetic cancer risk assessment) telephone intervention for underserved Latinas at high risk for hereditary breast and ovarian cancer. We seek to determine if the culturally and linguistically appropriate intervention, which incorporates adaptive motivational interviewing (AMI), will improve the uptake, preparedness for, and effectiveness of GCRA with high-risk Latinas. We hypothesize that; 1) Relative to the control group, patients randomized to the AMI pre-GCRA intervention will demonstrate greater GCRA appointment adherence, preparedness, knowledge, and satisfaction with the GCRA consultation process and experience; 2) Relative to the control group, patients randomized to the AMI pre-GCRA intervention will experience a greater reduction in anxiety and increased personal control prior to and after GCRA, and demonstrate greater cancer genetics knowledge after GCRA.
 
IRIS for BRCA Carriers – Decision Support Tools
The aims of the project are to develop an Individualized Risk Information System (IRIS), composed of a predictive model and the visual display of its output, which will provide female breast cancer patients who have a deleterious BRCA mutation with information regarding the risk of additional primary cancers and outcomes of risk reduction treatment choices and then to pilot use of the Individualized Risk Information System in breast cancer patients undergoing BRCA mutation testing.
 
Ethical, Legal, and Social Implications in Society
 
Genetic Discrimination and Access to Cancer Genetics Care
We surveyed non-genetics clinicians to explore the extent to which potential knowledge gaps and/or opinions of cancer genetics, genetic discrimination, and protective laws influences cancer genetics referrals and consequently access to risk-appropriate cancer screening and prevention. Although 96% of responders viewed genetic testing as beneficial to their patients, 75% stated genetic testing is likely to be declined by patients due to fear of genetic discrimination. The majority did not know that federal law (HIPAA) prohibits health insurance discrimination in the group market on the basis of genetic test results (61%) or that California State law prevents genetic information from being used as a criterion for health insurance coverage decisions (67%). Results indicate knowledge gaps and misperceptions as possible barriers to referral for genetic cancer risk assessment. A proposal is pending to develop an education program for clinicians regarding cancer genetics and current, as well as future, genetic discrimination laws may help to promote access to appropriate care.
 
Education, Community Networks, and the Hereditary Cancer Registry
 
Community Cancer Genetics and Research Training
The goal of our project is to provide intensive professional training programs in clinical cancer genetics and research collaboration for community-based clinicians. Interest and active participation in the course by clinicians from distinct disciplines, as well as outcomes to date, indicate that the course is a practical, cost-effective and efficacious way to deliver interdisciplinary cancer genetics training and post-course clinical and research support to clinicians practicing cancer genetic in the community setting, where there is defined need for cancer risk assessment services. Web-conference and web board interfaces being refined through the project are being utilized by many of the clinicians trained. On a practical level, numerous course participants joined the City of Hope Hereditary Cancer Registry, creating a broad based high risk clinic research network as a community laboratory for genetic epidemiology and clinical outcomes research.
 
The Hereditary Cancer Research Registry (Molecular Genetic Studies in Cancer Patients and their Relatives; IRB #96144) is a prospective research registry protocol that was initiated at City of Hope in 1996 as a biospecimen repository with associated personal and family medical history, psycho-social and clinical follow-up data (e.g., screening and risk reduction behavior, risk communication) collection. The CCGCRN is a network of City of Hope-affiliated sites and allows patients with a personal or family history of cancer to participate in cancer genetics research. To date, the study has accrued over 10,000 participants with 4-generation family histories and banked biospecimens (including DNA, cryopreserved lymphocytes and/or lymphoblastoid cell lines, and more recently collections of plasma for proteomic studies; a subset have snap-frozen tumor tissue).
 
Clinical Cancer Genetics
The City of Hope Division of Clinical Cancer Genetics is committed to being a national leader in the advancement of cancer genetics, screening and prevention, through innovative patient care, research and education.

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Beckman Research Institute of City of Hope is internationally  recognized for its innovative biomedical research.
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Learn more about City of Hope's institutional distinctions, breakthrough innovations and collaborations.
City of Hope Breakthroughs
Get the latest in City of Hope's research, treatment and news you can use on our blog, Breakthroughs.
 
 


NEWS & UPDATES
  • Cancer cells are voracious eaters. Like a swarm of locusts, they devour every edible tidbit they can find. But unlike locusts, when the food is gone, cancer cells can’t just move on to the next horn o’ plenty. They have to survive until more food shows up — and they do. Mei Kong, Ph.D., assistant […]
  • On Jan. 1, 2015, six City of Hope patients who have journeyed through cancer will welcome the new year with their loved ones atop City of Hope’s Tournament of Roses Parade float. The theme of the float is “Made Possible by HOPE.” The theme of the parade is “Inspiring Stories.” Repr...
  • When 25-year-old Angelina Mattos was diagnosed with Stage 4 oral cancer earlier this year, she learned that her only hope of survival was through the removal of her tongue, a surgery that leaves people without the ability to talk or eat normally, sometimes permanently ending their ability to speak. After hearin...
  • Two years ago, Joselyn Miller and her family sat together as stem cells from her brother’s bone marrow were infused into her – a precious gift of life that the family is excited to have the chance to pass to another patient in need. Today, the stem cell recipient is healthy. Her 23-year-old son Rex, who […...
  • Even as the overall rate of oral cancers in the United States steadily declines, the rate of tongue cancer is increasing — especially among white females ages 18 to 44. An oral cancer diagnosis, although rare, is serious. Only half of the people diagnosed with oral cancer are still alive after five years, accor...
  • Sometimes cancer found in the lungs is not lung cancer at all. It can be another type of cancer that originated elsewhere in the body and spread, or metastasized, to the lungs through the bloodstream or lymphatic system. These tumors are called lung metastases, or metastatic cancer to the lungs, and are not the...
  • When it comes to research into the treatment of hematologic cancers, City of Hope scientists stand out. One study that  they presented this week at the annual meeting of the American Society of Hematology suggests a new standard of care for HIV-associated lymphoma, another offers promise for the treatment of re...
  • Patients with HIV-associated lymphoma may soon have increased access to the current standard of care for some non-HIV infected patients – autologous stem cell transplants. Impressive new data, presented Monday at the annual meeting of the American Society of Hematology (ASH) in San Francisco, indicate that HIV-...
  • On Jan. 1, 2015, six City of Hope patients who have journeyed through cancer will welcome the new year with their loved ones atop City of Hope’s Tournament of Roses Parade float. The theme of the float is “Made Possible by HOPE.” The theme of the Rose Parade is “Inspiring Stories.”...
  • The holidays can create an overwhelming urge to give to people in need — especially to sick children and families spending the holidays in a hospital room. That’s a good thing. Holiday donations of toys and gifts can bolster the spirits, and improve the lives, of people affected by illness, and hospitals ...
  • On Jan. 1, 2015, six City of Hope patients who have journeyed through cancer will welcome the new year with their loved ones atop City of Hope’s Tournament of Roses Parade float. The theme of the float is “Made Possible by HOPE.” The theme of the parade is “Inspiring Stories.” Here...
  • Cancer has a way of “talking” to the immune system and corrupting it to work on its own behalf instead of defending the body. Blocking this communication would allow the immune system to see cancer cells for what they are – something to be fought off – and stop them from growing. A breakthrough Scientists [R...
  • On Jan. 1, 2015, six City of Hope patients who have journeyed through cancer will welcome the new year with their loved ones atop City of Hope’s Tournament of Roses Parade float. The theme of the float is “Made Possible by HOPE.” The theme of the parade is “Inspiring Stories.” By V...
  • On Jan. 1, 2015, six City of Hope patients who have journeyed through cancer will welcome the new year with their loved ones atop City of Hope’s Tournament of Roses Parade float. The theme of the float is “Made Possible by HOPE.” The theme of the parade is “Inspiring Stories.” The ...
  • On Jan. 1, 2015, six City of Hope patients who have journeyed through cancer will welcome the new year with their loved ones atop City of Hope’s Tournament of Roses Parade float. The theme of the float is “Made Possible by HOPE.” The theme of the parade is “Inspiring Stories.” In 2...