|
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
General Information
TreatmentMultidisciplinary Centers All Disease Centers listed below may be contacted by calling 800.767.9355 (800.ROSWELL):
Stem Cell Transplant Program Selected malignant and non-malignant hematologic disorders and solid tumors, including those listed below, are treated with autologous, allogeneic, or cord blood transplants:
Alternative/Complementary Medicine The Center for Enhancing Life, a division of RPCI’s Community Cancer Resource Center, offers patients and their families weekly yoga and meditation classes, affirmation tapes, journals, etc. For more information call Roswell Park’s Call Center at 877.ASK.RPCI (877.275.7724), 9 AM – 5:30 PM, EST, Monday – Friday. Late Effects Clinic In addition to its Clinic for Long-Term Survivors of Childhood Cancers (see Pediatric Oncology Services), RPCI also has a late effects clinic to track BMT survivors for secondary malignancies and long-term complications. Cancer Prevention and OutreachThe goal of the Cancer Prevention and Population Science Program is to lessen the human cost of cancer by developing more effective prevention strategies. Its research examines behaviors, environmental exposures and genetics as they relate to cancer and treatment outcomes. A major challenge in prevention and control of cancer is to identify those persons who are at greatest risk of developing cancer to help them alter their risk or at least they are appropriately screened. Through screening, disease is identified at more treatable stages, thereby reducing mortality from cancer. RPCI also works to identify predictors of recurrence after diagnosis and treatment so as to enhance cancer survival and quality of life among those affected by cancer. The chair of epidemiology, Christine Ambrosone, PhD, is an internationally recognized leader in studying the interaction of treatment and genetic predictors of response. The epidemiology program focuses on studies of cancer risk and a prognosis, with an emphasis on the role of nutrition and other factors, as well as genetics, in carcinogenesis, with case-control or cohort studies in cancers of the breast, prostate, lung and ovary, as well as melanoma and leukemia. The role that lifestyle factors, such as diet and supplement use, play in treatment outcomes, including toxicity during cancer therapy and long-term outcomes, is also a key area of research. Molecular epidemiological studies of cancer prognosis include research on pharmacogenetics, and genetic variability in a number of other biological and genetic pathways. Since tobacco use accounts for one third of all cancer deaths, a major focus of our program is devoted to research on ways to promote prevention and cessation of tobacco use. RPCI has an NIH-supported Transdisciplinary Tobacco Use Research Center of Excellence which is focused on population strategies to reduce tobacco use. Researchers in the program are also investigating how the design of cigarettes influences how people smoke and testing new methods to help people break their addiction to nicotine. RPCI operates the New York State Smokers’ Quitline and runs local tobacco control initiatives sponsored by the New York State Department of Health. Dietary studies continue to examine compounds that may reduce the risk of cancer. Advanced studies with selenium at RPCI are led by Clement Ip, PhD, one of the world’s foremost researchers in selenium biochemistry and molecular biology. The protective effect of selenium against cancer in humans is supported by epidemiological data as well as by intervention trials. This research is now at an exciting stage, with molecular biological approaches being used to suggest new population-based studies. Other chemoprevention research focuses on dietary substances that may inhibit bladder carcinogenesis. Researchers are also conducting studies on calcium, aspirin, selenium, and vitamin D for preventing breast and colorectal cancers. Highlights of the Tobacco Control at RPCI
A concentrated commitment to translational research by building prevention linkages to basic science distinguishes the prevention program at RPCI. Top tier basic scientists are recruited to the Institute specifically to collaborate with prevention scientists. To explore scientific leads and develop more effective strategies, prevention experts collaborate with researchers from genetics, biochemistry, pharmacology, toxicology, and immunology. RPCI clinicians work with primary care doctors, nurses, and other health care professionals in the community to enhance cancer control and screening to track cancer patterns, and to develop clinical interventions for prevention. Current efforts include a program to increase colorectal screening and to understand the dynamics of physician practices to determine what factors distinguish those practices in which screening is most pervasive. Prevention and early detection initiatives are also evaluating new approaches for cancer education of women, minorities, and high-risk populations. A critical resource for the Cancer Prevention Program is the establishment of a sample and data bank to provide the basic material for continued research. The Western New York Data Bank and Biorepository (DBBR) enrolls patients newly diagnosed with cancer. Patients consent to banking a blood specimen, contact for participation in future studies, and linkage of medical record data and findings from tissue research with blood specimens and other information. This resource is serving as the basis for a growing program in breast cancer molecular epidemiologic research, galvanized around the recruitment of a breast surgeon studying women at high-risk for invasive breast cancer. The conduct of patient-based research and development of preventive clinical trials are currently underway at RPCI. A second component of the DBBR, also containing blood specimens and exposure data, is focused on healthy members of the Western New York population: the Cancer Prevention Research and Evaluation Program (C-PREP). An important concomitant goal is to expand the laboratory basis and grounding of the prevention studies in the program. Not only is the program building a base of tissue for use in prevention, but also a number of excellent scientists with laboratory-based research programs have been recruited or trained to provide the basic technical and scientific expertise to advance this effort. Support ServicesRPCI offers counseling to patients/families/caregivers through the Department of Psychosocial Oncology. Social workers, psychologists, and pastoral care counselors are available for consultation. In addition to multiple disease-site–specific support groups (lung, leukemia and lymphoma, multiple myeloma, etc.), RPCI offers patients, family members, and caregivers other highly specialized types of group sessions, such as those for parents of pediatric patients, bone marrow transplant patients, and families dealing with grief and bereavement. A Child Life Specialist is on staff and a multidisciplinary School Outreach Program is available. Supportive CareRPCI has a multidisciplinary pain team, as well as a palliative/supportive care service. They can be reached through physician referral or by calling 716.845.2300 or 877.ASK.RPCI (877.275.7724). Home Care/Hospice Service Home care/hospice service can be arranged by the case manager or social worker based on patient choices, geographical area, insurance coverage, etc. Nutrition Service Registered dieticians are available for inpatients and outpatients with special dietary needs. Rehabilitation Service Service includes physical therapy, occupational therapy, nausea and fatigue management, speech therapy, and lymphedema management. Special ExpertiseCooperative Group Membership
Clinical and Research EffortsThe collaboration and regular contact between clinicians and scientists encourage translational research and the development of new investigator-driven clinical trials that will afford patients a wider range of treatment options, and ultimately lead to better approaches and improved technologies to reduce the cancer burden. Adult Oncology Program*
*FY 06–07. FY = April 1, 2006 to March 31, 2007 Roswell Park Cancer Institute
|
|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
General Information Line |
877.275.7724 (877.ASK.RPCI) Monday through Friday, 9:00 AM to |
International Calls (outside USA and Canada) |
716.845.2300 |
Location |
Buffalo, New York |
Facilities Description |
The campus has undergone a major modernization. This includes a brand-new inpatient unit and ambulatory care clinic, staffed by specialized nurses trained in pediatric oncology. Air handling has been designed to minimize risks of infection for immunocompromised patients. |
Travel Assistance |
Social workers provide assistance to patients and families in securing transportation and lodging. Patients and their families from RPCI use DoubleTree Club Hotel adjacent to the RPCI campus. The DoubleTree may be accessed from the first floor of RPCI's Basic Science building via an enclosed walkway. For information and reservations, call 716.845.0112. Their Web site is http://doubletree.Hilton.com/en/dt/hotels/index.jhtml?moreDesc=true&ctyhocn=BUFNYDT The Kevin Guest House, operated by volunteers, is the oldest hospitality house in the United States and the prototype for the 60 Ronald McDonald Houses across the country. The Kevin Guest House provides clean, safe, and peaceful living arrangements for families of patients receiving care at Roswell Park Cancer Institute. This is part of the National Association of Hospital Hospitality Houses. A Ronald McDonald House and a Hope Lodge are nearby. |
Social Support |
The Psychosocial Department offers support groups for pediatric patients and parents. All families are seen by a social worker and have on-going access to psychosocial support. A child-life specialist works with the children on the inpatient unit and the outpatient clinic. |
Home Health Care |
Several home care vendors are available to patients. The Essential Care Program provides psychosocial support to children with life-threatening illnesses in addition to their home care needs. |
Ages Treated |
Children from birth to age 18 are treated. |
Chairman, Pediatric Oncology |
Martin L. Brecher, MD |
Multidisciplinary Teams |
Each patient has a primary physician, nurse, and nurse practitioner that work with the patient throughout treatment and follow-up. A social worker, psychologist and child-life specialist are part of the team and work with patients and families as needed. |
Cooperative Group Membership |
Childrens Oncology Group (COG) |
Cooperative Group Activities |
Participation in COG committees includes:
Oncologists are Principal Investigators on numerous studies. |
Average Number of Pediatric Clinical Trials |
76 |
Pediatric Clinical Trial Coordinator |
Sandie Ciesla |
Researchers at Roswell Park are studying the late effects of therapy for childhood cancer. Late organ toxicities and psychosocial adjustments in long-term survivors are being investigated. COG studies of the neuro-cognitive effects of treatment of acute lymphocytic leukemia states and of babies with brain tumors will be coordinated in Buffalo, as well as the biology study in pediatric Hodgkin lymphoma.
Brain Tumors
Treatment at the multidisciplinary brain tumor clinic includes investigational drug therapies, the use of stereotactic radiosurgery in selected cases, and long-term follow-up, including the management of late effects. Stereotactic radiation therapy enables a high dose of radiation to be delivered to a small, intracranial area without harming adjacent tissue.
Long-Term Survivors
Roswell Park Cancer Institute operates a Long-Term Follow-Up Clinic, created to provide specialized medical care and counseling to former childhood cancer patients. It was one of the first of its kind in the nation. Dramatic success in the treatment of childhood cancers has resulted in a population of survivors who may have unique problems, such as difficulty in finding employment, questions concerning their reproductive capability because of cancer and its treatment, and the possibility of developing other malignancies later in life. This Clinic assists cancer survivors in building full, productive lives.
Lymphoma
Investigators at Roswell Park Cancer Institute sit on the Hodgkin lymphoma core committee for the Children’s Oncology Group (COG) and have chaired multiple institutional trials for Hodgkin lymphoma.
State-of-the-art diagnostic screening and cutting-edge therapies, including several immunotherapeutic trials (i.e., unlabeled and radiolabeled monoclonal antibody trials in the treatment of B-cell lymphomas), institutional and cooperative group (i.e., CALGB) trials, as well as standard and high-dose transplant therapies, are available.
Roswell Park Cancer Institute investigators piloted clinical trials in advanced small non-cleaved–cell lymphoma, which contributed to subsequent Children’s Oncology Group (COG) multi-institutional trials. Survival for patients with advanced stage disease has improved significantly, with more than 70 percent of patients cured.
Orthopedic Oncology
Roswell Park Cancer Institute introduced a new surgical technique that saves the limbs of over 90 percent of soft tissue sarcoma patients whose options were once limited to amputation. The multidisciplinary team emphasizes limb-sparing procedures, new drug therapies, and rehabilitation.
Stem Cell and Blood and Marrow Transplantation
The Roswell Park BMT team utilizes allogeneic and autologous blood and marrow transplantation, stem cell infusion, and umbilical cord transplantation in the treatment of pediatric malignancies and bone marrow failure stages.
Wilms Tumor
The National Wilms Tumor Study Group (NWTSG) was headquartered at Roswell Park Cancer Institute from 1990–2003, as a federally funded, multi-institutional cooperative group designed to study the biology and treatment of Wilms’ tumor in children. The group involved the collaboration of a large number of pediatric surgeons, pediatric oncologists, pediatric radiation oncologists, pediatric urologists, and allied health professionals with a goal of developing more effective treatments for children with Wilms’ tumor, as well as looking for the causes of this cancer. Due to therapeutic advances evaluated in NWTSG clinical trials, long-term survival rates for children with Wilms’ Tumor increased from about 65 percent for patients diagnosed in 1970 to 90 percent for patients diagnosed in 1990. Survival reaches 95 percent for patients who have localized, completely resected disease of “favorable histology.” The NWTSG has been incorporated into the Children’s Oncology Group.
Percent of children treated in each age range
Age Range |
0–1 |
2–5 |
6–12 |
13+ |
Percent Treated |
5% |
10% |
65% |
20% |
Pediatric Oncology Program
No. of Inpatient Beds |
No. of Oncologists/ Related Specialists |
No. of Admissions |
Average Length of Stay(days) |
No. of New Outpatients |
Total Outpatient Visits |
No. of Bone Marrow Transplants |
24 |
19 |
512 |
3.7 |
54 |
3,694 |
6 |
The Clinical Genetics Service at Roswell Park Cancer Institute is committed to the provision of quality genetic services by professionals with expertise. The team includes the director, who is a licensed health care practitioner and board-certified genetic counselor, as well as board-certified genetic counselors who act as institutional and community resources for these services. The program offers clinical genetic testing for cancer-associated susceptibility genes that have been recognized by the New York State Department of Health Wadsworth (Genetics) Laboratory as having potential clinical value. Clinical testing for cancer-associated susceptibility genes is offered in conjunction with appropriate cancer and genetic risk assessment, comprehensive genetic consultation, assessment of criteria for eligibility for testing, and a thorough process of informed consent. Roswell Park Cancer Institute is also involved in both scientific and clinical research studies, some of which include elements of genetic testing and/or enhanced screening for persons at increased risk.
Location |
Buffalo, New York |
Director, Clinical Genetics Services |
Carolyn D. Farrell, MS, CNP, CGC |
Schedule Appointments |
716.845.8400 |
Roswell Park Cancer Institute provides a full range of genetic services, including risk assessment and counseling, testing, screening, risk management and prevention approaches, and research. The following sets out the components of the comprehensive genetic testing program.
Physician and Community Awareness |
The Clinical Genetics Service offers and has provided an extensive array of education programs for professionals and staff within and outside Roswell Park Cancer Institute. Also, programs are offered to community health care providers and the lay public such as community agencies, graduate and undergraduate students at universities/colleges, high and middle school students, and support groups. Presentations are also made at state and national meetings and conferences. |
Education |
The Clinical Genetics Service received a federal grant for a three-faceted program in education and training in cancer and genetics. This effort targeted physicians and allied health care professionals, genetic counselors and nurses, and the general public, including minority populations. |
Identify Eligible Subjects/Referral |
The clients and families seen by the Roswell Park Clinical Genetics Service are referred by:
|
Pre-test Counseling and Risk Assessment |
Clinical genetic services include consultation with individuals and families who are at risk for, or who are concerned about, hereditary susceptibility to cancer. The consultation includes:
It also includes discussing potential use of genetic testing results for medical management and/or health care; effecting informed consent; and advising about and reinforcing appropriate cancer screening measures, testing, and referrals. Furthermore, genetics professionals assist the client and/or family in understanding potential risk to relatives and offer assistance in communicating with and/or offering genetic consultation to these relatives. Risk assessment and counseling occur prior to testing and, if the client undergoes genetic testing, risk assessment and counseling are re-evaluated in the context of the test results. |
Informed Consent Procedures |
An informed consent process is an integral part of offering any clinical genetic testing for cancer-associated susceptibility genes. Every element of the informed consent document is completely addressed during the genetic consultation prior to presenting the individual with the actual document. These consents include all of the essential components mentioned under pre-test counseling. Furthermore, genetic testing is not generally offered on the same day as the initial, complex consultation; the consent is signed at a subsequent visit to assure that the person is informed and has had the chance to have all questions addressed. |
Confidentiality Standards |
Recognizing the importance of confidentiality and privacy for results of individual genetic testing, RPCI has implemented the following mechanisms:
|
||||||||||||||||
Testing |
Roswell Park uses licensed commercial laboratories for most cancer gene testing. Laboratories that have New York State certification for genetic testing and have a New York State permit for the specific gene test perform all clinical genetic testing. |
||||||||||||||||
Available Testing at or through Roswell Park Cancer Institute (note: this is a representative, not a complete, list) |
|
||||||||||||||||
Laboratory Quality Assurance |
Laboratories that have CLIA and New York State certification for genetic testing and have a New York State permit for the specific gene test perform all clinical genetic testing. These laboratories include but are not limited to Myriad Genetics, Inc., Johns-Hopkins, Boston University, Yale, as well as others relevant to the specific gene or condition. |
||||||||||||||||
Test Result Interpretation |
Genetic experts analyze and interpret all genetic testing results in light of the client’s overall health risk assessment, including personal and family history, the published literature, and database repositories of mutations (through laboratories, the Internet, and other resources). The risk conveyed by a specific mutation is estimated based on all the above data for each individual’s case. |
Post-test Counseling |
All results of clinical genetic testing are provided in person by one of the CGS genetics professionals. Findings of the genetic testing are communicated and explained, together with interpretation of the significance and limitations of these results. Interpretation also includes how this information may be clinically applicable, how the information may modify risk, that this information should not be used as the sole factor in making clinical decisions, how this information may be relevant to other relatives in the family, and considerations about handling and confidentiality of the results. Follow-up care is addressed through return to specific clinics, referrals as indicated, coordinating with the primary care provider, and encouraging regular re-contact with genetic services with the understanding that knowledge in this area is rapidly evolving. |
Cancer Screening |
The Clinical Genetics Service encourages clients and families to follow recommended cancer screening guidelines as well as early and enhanced approaches to screening, when appropriate, and to follow-up regularly with this or another genetics service to learn of any new development that may be relevant to that individual or family. |
Chemoprevention, Medical and Surgical Management |
Prophylactic treatment and interventions are mentioned as one approach to risk management; however, the expert resources of surgical and medical oncologists at Roswell Park Cancer Institute address these considerations more specifically and extensively. |
Psychological and Supportive Services |
Roswell Park has three full-time psychologists who are available to individuals and families for consultation. Roswell Park also has an active Social Work and Case Management Department and support groups. |
The genetics professionals of the Roswell Park Clinical Genetics Service support genetics research studies and clinical trials both directly and indirectly. Individuals and their interested relatives are encouraged to consider participation in research studies to further understanding about genetics and cancer. Both clinical and basic science research areas are evolving as new information comes to light.
Research Area |
Description |
Identifying New Genes and Genetic Syndromes |
The genetics professionals are involved with several departments within the Institute that are involved with research to identify new cancer susceptibility genes. Some of these projects include: analyzing genes in families with large numbers of affected individuals with multiple non-site–specific cancers; evaluation of benign masses or skin lesions and increased head circumference and their relation to cancer genetic syndromes; and previous endeavors, including recruiting volunteers whose genetic material was key to research to sequence the Human Genome. |
Improving Awareness of Genetic Resources |
Through a study entitled “DNA Banking: Saving for the Future,” the genetic professionals administered a questionnaire to cancer genetic counselors and New York State oncologists regarding their awareness and utilization of DNA banking. Results from this study have been used to create educational materials for both health care practitioners and the general public. |
Improving Testing Methods |
The Clinical Genetics Service adheres to the New York State Genetics Laboratory Testing Program, which requires use of a New York State-approved laboratory for clinical genetic testing. We participate in studies to evaluate the fidelity of and to explore approaches to modify genetic testing. Researchers at Roswell Park use and develop innovative techniques for genetic analyses. |
Chemoprevention Trials |
Genetics professionals take an active role in informing about and promoting chemoprevention trials. For example, a letter was sent to individuals in the Family Cancer Registry, informing them about upcoming chemoprevention trials for families with colon cancer. |
Discovering Clinical Treatments for Genetic Disorders |
The clinicians and scientists at Roswell Park are actively involved in research efforts, treatment protocols, and networks with other professionals to integrate current treatments and foster innovative approaches. |
Studying Impact of Receiving Genetic Information on Health-Related Outcomes |
The Clinical Genetic Service is evaluating the influence of genetic information on risk management behaviors and quality of life factors. |
Tracking Long-Term Results of Prophylactic Surgeries |
The various services/departments at Roswell Park each follow their clients who have undergone prophylactic surgery. |
Familial Registries/Databases |
The Clinical Genetics Service is in the process of compiling data from individuals and families seen through the clinical service into a pedigree and database system, which has the necessary mechanisms for passwords and security of information. This Clinical Genetic Service also works closely with existing Roswell Park registries and databases, including the Family Cancer and the Gilda Radner Ovarian Cancer Registries and the RPCI Data Bank and Biorepositories. Individuals and families within these registries actively participate in efforts to support research in genetics and cancer. The Roswell Park Cancer Institute also has some site-specific cancer registries. |
Quality Assurance |
The quality assurance of genetic services is addressed in several ways. These include: implementation of IRB and clinical protocols, as well as awareness and implementation of existing guidelines and standards as defined by professional genetics organizations (American Society of Human Genetics, American College of Medical Genetics, National Society of Genetic Counselors, and International Society of Nurses in Genetics). Roswell Park Cancer Institute genetics and oncology professionals also participate in genetics guidelines development and are members of the Steering Committee and Guidelines Development Committee for Clinical Guidelines for Breast Cancer Risk Assessment and Genetic Testing, supported by the American College of Medical Genetics and the New York State Department of Health. In addition, staff actively participate in and promote attention to the ethical, legal, and psychosocial aspects of genetic evaluation and testing. |
Training/Professional Development |
In the past, the Clinical Genetics Service genetic professionals received an education and training grant from the NIH that included the development of a clinical rotation for master level nurses and genetic counselors in cancer genetics. In addition, the genetic professionals present at, and participate in, many institutional and national continuing education programs for physicians and other allied health care professionals in the area of oncology and genetics. |
Last updated: 2/20/2008
|
NCCN 1st Annual Forum: Innovative Diagnostics & Therapeutics in Cancer Care™ |
|
|