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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
  • Rob Darakjian was diagnosed with acute lymphoblastic leukemia at just 19 years old. He began chemotherapy and was in and out of the hospital for four months. After his fourth round of treatment, he received a bone marrow transplantation from an anonymous donor. Today, he’s cancer free. In his first post, ...
  • Advanced age tops the list among breast cancer risk factor for women. Not far behind is family history and genetics. Two City of Hope researchers delving deep into these issues recently received important grants to advance their studies. Arti Hurria, M.D., director of the Cancer and Aging Research Program, and ...
  • City of Hope is extending the reach of its lifesaving mission well beyond U.S. borders. To that end, three distinguished City of Hope leaders visited China earlier this year to lay the foundation for the institution’s new International Medicine Program. The program is part of City of Hope’s strategi...
  • A hallmark of cancer is that it doesn’t always limit itself to a primary location. It spreads. Breast cancer and lung cancer in particular are prone to spread, or metastasize, to the brain. Often the brain metastasis isn’t discovered until years after the initial diagnosis, just when patients were beginning to ...
  • Blueberries, cinnamon, baikal scullcap, grape seed extract (and grape skin extract), mushrooms, barberry, pomegranates … all contain compounds with the potential to treat, or prevent, cancer. Scientists at City of Hope have found tantalizing evidence of this potential and are determined to explore it to t...
  • Most women who are treated for breast cancer with a mastectomy do not choose to undergo reconstructive surgery. The reasons for this, according to a recent JAMA Surgery study, vary. Nearly half say they do not want any additional surgery, while nearly 34 percent say breast cancer reconstruction simply isn’t imp...
  • The leading risk factor for breast cancer is simply being a woman. The second top risk factor is getting older. Obviously, these two factors cannot be controlled, which is why all women should be aware of their risk and how to minimize those risks. Many risk factors can be mitigated, and simple changes can lead...
  • All women are at some risk of developing the disease in their lifetimes, but breast cancer, like other cancers, has a disproportionate effect on minorities. Although white women have the highest incidence of breast cancer, African-American women have the highest breast cancer death rates of all racial and ethni...
  • First, the good news: HIV infections have dropped dramatically over the past 30 years. Doctors, researchers and health officials have made great strides in preventing and treating the disease, turning what was once a death sentence into, for some, a chronic condition. Now, the reality check: HIV is still a worl...
  • Screening for breast cancer has dramatically increased the number of cancers found before they cause symptoms – catching the disease when it is most treatable and curable. Mammograms, however, are not infallible. It’s important to conduct self-exams, and know the signs and symptoms that should be checked by a h...
  • Rob Darakjian was diagnosed with acute lymphoblastic leukemia at just 19 years old. He began chemotherapy and was in and out of the hospital for four months. After his fourth round of treatment, he received a bone marrow transplantation from an anonymous donor. Today, he’s cancer free.   In his previ...
  • In a single day, former professional triathlete Lisa Birk learned she couldn’t have children and that she had breast cancer. “Where do you go from there?” she asks. For Birk, who swims three miles, runs 10 miles and cycles every day, the answer  ultimately was a decision to take control of her cancer care. Afte...
  • More and more people are surviving cancer, thanks to advanced cancer treatments and screening tools. Today there are nearly 14.5 million cancer survivors in the United States. But in up to 20 percent of cancer patients, the disease ultimately spreads to their brain. Each year, nearly 170,000 new cases of brain ...
  • Cancer cells are masters of survival. Despite excessive damage to their most basic workings and the constant vigilance of the body’s immune system, they manage to persevere. Much of this extraordinary ability to survive falls under the control of proteins bearing the name STAT, short for signal transducer and a...
  • One person receives the breast cancer diagnosis, but the cancer affects the entire family. Couples, in particular, can find the diagnosis and treatment challenging, especially if they have traditional male/female communication styles. “Though every individual is unique, men and women often respond differently d...