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Adult Oncology Services

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Supportive Care

Special Expertise

Clinical and Research Efforts


Pediatric Oncology Services
Roswell Park Cancer Institute

Introduction

General Information

Clinical and Research Information

Special Expertise

Statistics
Roswell Park Cancer Institute


Genetic Counseling and Testing Service

Introduction

Intake Process

Testing

Post-Test Counseling and Follow-Up

Research

Other Components of Genetic Services


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  Roswell Park Cancer Institute

For information on clinical trials at this NCCN Member Institution click here.

Since 1898, Roswell Park Cancer Institute (RPCI), America's first cancer center, has forged an exemplary reputation based on the combined strength of its basic/translational research, multidisciplinary oncology teams, educational programs and compassionate staff. A seamless interface of scientific inquiry and clinical application, and an aggressive clinical trials program, afford patients access to promising breakthroughs in cancer diagnostics, technology and therapies. RPCI is the only facility in Upstate New York to hold the National Cancer Institute designation of "comprehensive cancer center."

RPCI has been credited with initiating the world's first chemotherapy studies, and pioneering the prostate-specific antigen (PSA) test and photodynamic therapy. Specialized treatments include high-priority protocols and new therapeutic regimens based on the most recent advances in biochemical pharmacology, genetics, immunology, and biological response modifiers. Specialized programs have been established for blood and marrow transplantation, neuro-oncology, pigmented tumors, genetic counseling and testing, long-term survivors of childhood cancer, pain management, photodynamic therapy, robotics, and minimally invasive surgery (Gamma Knife, brachytherapy, RFA, VATS, etc).

In addition:

  • The Institute’s Center for Pharmacology & Therapeutics is one of only a few centers in the nation capable of taking drug development from conception stage through clinical trials and FDA approval within the confines of a single institution.
  • Roswell Park has become a significant contributor to basic, translational and clinical prostate cancer research in the United States. RPCI investigators have taken a national leadership role in laboratory and clinical studies of vitamin D and prostate cancer.
  • RPCI’s Blood and Marrow Transplant Program is certified by the National Marrow Donor Program as a Transplant, Collection and Apheresis Center.
  • RPCI is one of only a handful of centers in the nation to offer Interleukin-2 therapy for metastatic kidney cancer.
  • RPCI geneticists created the first gene library that was used to map and sequence the human genome. An RPCI geneticist was one of a handful of researchers who led teams involved in the international effort to map the human genome.
  • RPCI immunologists are exploring new therapies—such as cytokines, monoclonal antibodies, and vaccines—that boost, direct, or restore the body’s normal defenses against cancer. Recent “translational” investigations include:
    • Clinical studies on Rituxan, the first FDA-approved monoclonal antibody for treating non-Hodgkin lymphoma.
    • Studies on hyperthermia—a process by which the whole body temperature is raised two to three degrees above normal. By raising a person’s temperature, the immune system may be stimulated against tumors in much the same way that natural fevers help fight off infections.
    • Studies on how tumors avoid the immune system by confining themselves to a limited number of tissues and organs. By delivering drugs that stimulate the immune response directly into these “compartments,” physicians can gain the advantage in this cellular game of hide-and-seek.
  • RPCI is poised to become a leader in phase I/phase II evaluation of new drugs.
  • RPCI maintains registries for individuals with a genetic predisposition to certain cancers.
  • RPCI epidemiologists, behavioral scientists, cancer prevention experts, biostatisticians, and other applied researchers conduct important cancer studies on tobacco control, chemoprevention, high-risk populations, long-term effects of treatment, screening and early detection strategies, nutrition and lifestyle, environmental exposures, and stress and coping, among others.
  • RPCI’s comprehensive health disparities program aggressively advances community-based research to reduce, eliminate and prevent health disparities in underserved populations.
  • In conjunction with the National Comprehensive Cancer Network, RPCI physicians and administrators have taken a national leadership role in crafting and implementing national measurement/benchmarking tools to define quality.

Over the last decade, RPCI has undergone major renovation and expansion, adding nearly 200 faculty, opening a new hospital facility and a $74 million Center for Genetics & Pharmacology, and forming strategic partnerships with research and clinical investigators and medical centers throughout the state and nation.

Committing the infrastructure, intellectual capital, and necessary resources to convert its scientific discoveries into real-world products/applications, RPCI has recently established three biotech spin-off companies with the potential to change the future of cancer medicine.
 
RPCI ranks among the nation¹s top 1% of cancer centers and teaching hospitals for patient satisfaction with physician services and overall care; and among the top research centers funded by the NCI/NIH.

In April of 2007, Donald L. Trump, MD, former Chairman of RPCI¹s Department of Medicine and Associate Institute Director, was appointed President and CEO. Dr. Trump oversees operations, philanthropic and operating budgets, capital improvements, research priorities and clinical and scientific strategic planning.


RPCI’s Vital Statistics

  • One of the top 20 employers in Western New York
  • Over 2,900 employees including 135 physicians, 107 senior scientists, 472 nurses
  • Hospital Admissions: 4,215
  • Outpatient Visits: 161,869
  • Patients Under Active Care: 24,027
  • Patient Origin: 36 States, 5 Foreign Countries
  • Number of Beds: 101
  • Average Length of Stay: 7.1 days
  • Results of Patient Satisfaction Surveys: Over 95 percent of Roswell Park patients consistently rate the care at Roswell Park as excellent or very good and over 95 percent of patients say they would recommend Roswell Park to other cancer patients.

Research/Biotechnology

  • Grants/Contracts: $87.4 million
  • Research and development agreements: 173 collaborations
  • 63 licenses
  • 119 patents


Roswell Park Cancer Institute
Adult Oncology Services


Introduction

While Roswell Park Cancer Institute has made many contributions to the practice of cancer medicine, its strength lies in its multidisciplinary approach to cancer care and management. Decisions made at the time of diagnosis and with recurrent disease demand multidisciplinary input to assure the selection of a “best practice” treatment plan for the patient. RPCI’s cancer program is disease-specific, with teams that work in centers. Team specialists work in concert to develop a comprehensive, individualized care program for each patient—from diagnosis, through treatment and rehabilitation, to discharge and follow-up care.

In addition, the collaboration and regular contact between clinicians and scientists encourage translational research and the development of new investigator-driven clinical trials that afford patients a wider range of treatment options, and ultimately lead to better approaches and improved technologies to reduce the cancer burden.

Multidisciplinary Teams

The faculty of RPCI is organized into disease-specific, multidisciplinary teams, with broad representation from clinical care and research, as well as basic and applied science. These teams of medical, surgical, and radiation oncologists; pathologists; nurse practitioners; and nurses work in common locations known as “Centers”, which are conveniently located within the Hospital (see Multidisciplinary Centers, below).

Special Expertise

Specialty Centers include:

  • Minimally Invasive Surgical Center (includes robotic surgery, video-assisted thoracic surgery, radiofrequency ablation, Gamma Knife radiosurgery, brachytherapy, etc.)
  • Photodynamic Therapy Center
  • Blood and Marrow Transplantation, Apheresis, and Collection Center
  • Center for HIV-Related Malignancies
  • Neuro-Oncology Center
  • Myelodysplastic Syndrome Center

Other areas of expertise include:

  • Clinical Genetics
  • Maxillofacial Prosthetics
  • Microsurgery and Reconstruction for Head and Neck Tumors
  • Cancer Registries
  • Limb-Conserving Surgery for Soft Tissue Sarcomas
  • Pain Management
  • Robotics
  • Clinical Studies (all phases)
  • Late Effects Clinics (for BMT and Childhood Cancer Curvivors)


General Information

General Information

877.275.7724 (877.ASK.RPCI)
www.roswellpark.org

Referring Physician/Self-Referral Line

800.767.9355 (800.ROSWELL)

Location

Buffalo, NY

Facility

RPCI’s campus on the Buffalo Niagara Medical Campus includes approximately 1.5 million square feet of space equally distributed between clinical programs and research/education functions. Approximately 60 percent of the campus has undergone major renovation or has been newly built since 1998. 

The newest building on the RPCI Campus, the 170,000 sq. feet Center for Genetics and Pharmacology opened in Spring 2006. This Center is one of three buildings comprising the new Life Sciences Complex on the Buffalo Niagara Medical Campus. RPCI, the University at Buffalo’s Center of Excellence in Bioinformatics, and the Hauptman-Woodward Medical Research Institute, through the exchange of ideas and seamless collaboration of resources and talent, are translating research into products and processes for commercialization.

Travel Assistance

Travel assistance is coordinated through the Division of Social Work and Case Management, Department of Psychosocial Oncology.

Lodging

Lodging may be coordinated through the Division of Social Work and Care Management, or by the patient/family. Available lodging includes The DoubleTree Club Hotel, which is adjacent to RPCI, and The Kevin Guest House, the nation’s first hospitality house, which offers affordable housing to RPCI patients, including BMT patients, and their families.


Treatment

Multidisciplinary Centers

All Disease Centers listed below may be contacted by calling 800.767.9355 (800.ROSWELL):

  • Breast Center
  • Chemotherapy/Infusion Center
  • Dermatology Center
  • Sarcoma/Melanoma Center
  • Thoracic Center
  • Gastrointestinal Center
  • Urology Center
  • Gynecology Center
  • Head & Neck/Dental Center
  • Hematology Center
  • Neuro-Oncology Center
  • Pain Management Center
  • Pediatric Center

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:

  • Amyloidosis
  • Aplastic Anemia
  • Acute Lymphoid and Myeloid Leukemias
  • Chronic Lymphoid and Myeloid Leukemias
  • Ewing Sarcoma
  • Hodgkin Lymphoma and non-Hodgkin Lymphoma
  • Multiple Myeloma  
  • Myelodysplastic Syndromes
  • Neuroblastoma
  • Testicular Cancer/Germ Cell Tumors
  • Immunodeficiency Disorders

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 Outreach

The 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

  • As one of the NIH-designated Transdisciplinary Tobacco Use Research Centers, RPCI is examining how national tobacco control policies such as taxation, smoke-free laws, advertising restrictions, product warns, and product regulation influence tobacco use behaviors.
  • RPCI also has established a tobacco product testing lab and maintains one of the largest repositories of tobacco products in the world. This lab is now assisting NIH and WHO in establishing standards for evaluating tobacco products.
  • New York State was the first state in the nation to adopt a product standard to reduce the fire risk of cigarettes in 2004. RPCI researchers are currently evaluating how effective the low-ignition propensity (LIP) standard has been in lower fire risk and how smokers have responded to the new law.
  • RPCI has led efforts around the globe to evaluate the hazards of exposure to secondhand smoke through its global air monitoring program. Scientists in 40 countries are participating in this initiative through a web-based network that can be seen at http://tobaccofreeaim.com.
  • RPCI also operates a state-of-the-art communication laboratory with eye-tracking equipment to support studies evaluating consumer response product warnings, anti-tobacco advertising, and other types of health communications.
  • RPCI physicians and scientists are conducting research testing new behavioral and pharmacologic approaches to help people quit smoking.
  • RPCI runs the New York State Quitline and Quitsite to assist smokers in cessation efforts and to provide counseling and educational materials to healthcare providers and community organizations.
  • RPCI researchers were instrumental in digitizing tobacco industry documents and video archives that can be accessed online at http://tobaccodocuments.org and tobaccovideos.com.
  • RPCI also operates outreach programs in community and health care provider tobacco control in the Western New York region. These programs include mass media campaigns to promote quitting, efforts to encourage adoption of home and care smoke-free policies and assistance to health care institutions so that they identify and offer evidence based cessation services to all tobacco users.

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 Services

RPCI 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 Care

RPCI 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 Expertise

Cooperative Group Membership

Cooperative Group Membership List

  • CALGB
  • RTOG
  • ACOS
  • CTSU
  • GOG
  • COG
  • SWOG
  • NSABP

Activities in Cooperative Group

RPCI houses the GOG Statistical Office

Average Number of Adult Clinical Trials

RPCI currently has a total of 552 active clinical research studies. This includes 242 therapeutic studies and 310 non-therapeutic studies.


Clinical and Research Efforts

The 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*

No. of Inpatient Beds (Medical/Surgical)

No. of Admissions

Average Length of Stay (days)

No. of New Outpatients

No. of Oncologists (Medical and Surgical)

101

4,215

7.1 days

6,805

135

*FY 06–07. FY = April 1, 2006 to March 31, 2007


Roswell Park Cancer Institute
Pediatric Oncology Services


Introduction

Roswell Park Cancer InstituteThe major goals of Roswell Park Cancer Institute’s Department of Pediatrics are to provide state-of-the-art treatment to children with malignant disorders, to conduct basic and clinical research aimed at improving cure rates and decreasing long-term toxicities, to identify and manage the acute and long-term complications of therapy, and to establish new and effective coping interventions for patients and their families. Over the years, Roswell Park Cancer Institute has pioneered many treatment innovations and cancer-related discoveries.

The pediatric oncologists have expertise in the management of all childhood cancers and are world-renowned experts in the areas listed below.

Special Expertise

  • Brain Tumors
  • Long-Term Survivors
  • Lymphoma
  • Orthopedic Oncology
  • Stem Cell and Blood and Marrow Transplantation
  • Wilms Tumor


General Information

General Information Line

877.275.7724 (877.ASK.RPCI) Monday through Friday, 9:00 AM to
5:30 PM, EST. A voice mail system is available after hours and calls are returned the next business day.

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.


Clinical and Research Information

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

Children’s Oncology Group (COG)

Cooperative Group Activities

Participation in COG committees includes:

  • Hodgkin Lymphoma
  • Leukemia/Lymphoma Data Safety Monitoring
  • Voting Body
  • Neuroscience
  • Central Nervous System
  • Pathology
  • Nominating
  • Solid Tumor Data Safety Monitoring
  • Late Effects
  • Adolescent Young Adult

Oncologists are Principal Investigators on numerous studies.

Average Number of Pediatric Clinical Trials

76

Pediatric Clinical Trial Coordinator

Sandie Ciesla
716.845.4449


Research Efforts

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.


Special Expertise

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.


Statistics

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

 


Roswell Park Cancer Institute
Genetic Counseling and Testing Service

Roswell Park Cancer InstituteThe 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.

Intake Process

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:

  • Physicians and clinics within the institute
  • Physicians/health care providers extending from the local area to across the state
  • Individual client inquiry and self-referral

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:

  • Assessing hereditary cancer risk
  • Educating about the biology and genetics of specific cancers
  • Constructing a genetic pedigree
  • Determining co-existing physical or medical problems that may be associated with cancer genetic syndromes
  • Informing about and/or arranging for genetic testing
  • Discussing alternatives to genetic testing
  • Addressing social, ethical, and legal issues involved with genetic testing

 

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.


Testing

Confidentiality Standards

Recognizing the importance of confidentiality and privacy for results of individual genetic testing, RPCI has implemented the following mechanisms:

  • Clinical genetic test specimens and requisitions are sent out and results are received back directly by the Clinical Genetics Service.
  • The result of the test is communicated directly to the client.
  • The Clinical Genetics Service also recognizes the potential that genetic test result information is relevant to medical management. Thus, we encourage the individual to share this information with their health care provider and their family members, but also stress the importance of discussing how this confidential information should be handled.
  • In the context of genetic testing done as part of research protocols, individuals are informed that
    • the purpose of these efforts is to further understanding of the scientific basis of cancer
    • they will not receive any individual result
    • that the specimen may be handled in an anonymous fashion
    • the laboratories and scientist performing these tests are highly qualified
  • The Clinical Genetics Service, with the support of the Medical Records Committee, has established that
    • the genetics pedigree will be incorporated into a specific section of the medical record,
    • names/identifiers of relatives are not included in the main RPCI chart and,
    • a special subcommittee will address how issues related to genetic testing results are and will be handled.

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)

Cancer/Syndrome

Gene

Breast & Ovarian Cancer

BRCA1 & BRCA2

Familial Adenomatous Polyposis Colon Cancer

APC

Hereditary non-Polyposis Colon Cancer

MSH2 & MLH1 & MSH6

Li-Fraumeni Syndrome

p53

Multiple Endocrine Neoplasia 2

RET

Retinoblastoma

RB1

Cowden Syndrome

PTEN

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 and Follow-Up

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.


Research

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.


Other Components of Genetic Services

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

 

 

Educational Opportunities

NCCN 1st Annual Forum: Innovative Diagnostics & Therapeutics in Cancer Care™

September 4, 2008
New York Marriott at the Brooklyn Bridge
New York, New York

NCCN 3rd Annual Congress: Hematologic Malignancies™

September 5 – 6, 2008
New York Marriott at the Brooklyn Bridge
New York, New York


Exhibitor Information


NCCN Regional Guidelines Symposia

NCCN Breast Cancer Guidelines Symposium
Washington, D.C. (Monday, May 12, 2008)

NCCN Colon, Rectal, & Anal Cancers Guidelines Symposia
Seattle, Washington (Wednesday, June 11, 2008)

NCCN Breast Cancer Guidelines Symposium
Palo Alto, California (Friday, June 20, 2008)

NCCN Kidney Cancer Guidelines Symposium
Birmingham, Michigan (Friday, June 20, 2008)

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