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General Information - Lucile Packard Children’s Hospital at Stanford
Clinical and Research Information
Research EffortsExamples of studies in progress are:
Special ExpertiseBrain Tumors A multidisciplinary team of experts in Neuro-Oncology, Neurosurgery, Radiotherapy, and Neuroradiology have established a nationally recognized program for children with brain tumors. These physician scientists are key investigators for innovative therapeutic studies from the Children’s Oncology Group, Pediatric Brain Tumor Consortium, and other regional groups. At Lucile Packard Children’s Hospital, this physician team meets weekly for the region’s only pediatric-dedicated Neuro-Oncology Tumor Board. The service’s Neuro-Oncology clinic provides comprehensive care to address physical, educational, social, and emotional needs of children affected by brain tumors and their therapies. Hodgkin’s Disease Investigators at Stanford are recognized internationally as experts in the treatment of Hodgkin’s disease. Management of children with low-dose radiation combined with chemotherapy was pioneered at Stanford and has become the standard around the world. Innovative new therapies designed to minimize toxicity for children with favorable prognosis and intensifying therapy for those with less favorable clinical features are the focus of current studies. Late Effects/Long-Term Survivorship The pediatric group at Stanford/LPCH is part of a national study of 25,000 survivors of childhood cancer and places special emphasis on the assessment of cardiac, pulmonary, and neurocognitive late effects. Investigators at Stanford are leaders in dissecting the immunology of acute lymphoblastic leukemia and in discerning the molecular events that underlie leukemogenesis. Researchers are nationally recognized for studies directed at reversing multi-drug resistance in leukemia and applying these findings to the treatment of children with refractory leukemia and those with newly diagnosed acute non-lymphocytic leukemia. Non-Hodgkin’s Lymphoma (NHL) Investigators from Stanford are internationally recognized experts in the management of non-Hodgkin’s lymphomas in children. Stanford faculty have played a key role in the development of cooperative group protocols for children with NHL and have coordinated efforts in early stage NHL for the past 15 years. Resistant Cancers and New Agents Stanford has an NIH-funded pediatric clinical research center that is dedicated, in part, to testing new therapies for children with advanced refractory cancer. Novel anti-cancer agents including monoclonal antibodies or immunotoxins specifically directed against leukemias, differentiating agents to induce tumor growth arrest, targeted radiotherapy, and other new cancer chemotherapeutic drugs are administered to children with refractory cancer. In addition, important laboratory/clinical efforts directed at elucidating and overcoming mechanisms of drug resistance is an important part of the Pediatric Oncology program. Sarcomas of Bone and Soft Tissue Physicians at Stanford have established multidisciplinary programs in sarcomas of bone and soft tissue led by international experts in Pediatric Oncology, Radiation Oncology, Orthopedic Oncology, and Pathology. There is a strong commitment for optimal individualized tumor management with preservation of maximum function. Investigators from Stanford have had major leadership roles in important trials in malignant bone tumors, demonstrating the role of adjuvant chemotherapy in the treatment of osteosarcoma, the safety of reducing the volume of radiotherapy in treating Ewing’s sarcoma, and the efficacy of intensified regimens for the treatment of Ewing’s sarcoma and osteosarcoma. Investigators from Stanford have played leading roles in the Intergroup Rhabdomyosarcoma Study Group (IRSG) and have major input in the design of biologic and therapeutic studies for children with Rhabdomyosarcoma. Studies of the IRSG enroll almost all children with Rhabdomyosarcoma in the United States and Canada. Stem Cell Transplantation Stanford has a very active pediatric stem cell transplantation program specializing in transplants for hematologic malignancies, solid tumors, and genetic disorders. The program provides transplants using a variety of stem cell sources including autologous, purged autologous with tumor cell removal, unpurged peripheral blood stem cells, autologous transplants including both bone marrow and peripheral blood stem cells from related and unrelated donors, partial mismatches with stem cell manipulation, and cord blood transplants. Diseases treated include malignancies such as acute or chronic leukemia, Hodgkin’s or non-Hodgkin’s lymphoma, and selected pediatric solid tumors such as neuroblastoma and rhabdomyosarcoma. Lucile Packard Children’s Hospital is a designated CCS Bone Marrow Transplant Center and Center of Excellence. The pediatric BMT service is an approved transplant center for Children's Oncology Group protocols.
StatisticsPercent of children treated in each age range
Pediatric Oncology Program, 2002
Stanford Comprehensive Cancer Center
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Location |
Stanford, California (San Francisco/San Jose Area) |
Director, Cancer Risk Assessment Program |
James Ford, MD |
Breast and Ovarian Surveillance Service |
Allison Kurian, MD |
Colon/GI Cancer Risk Assessment Clinic |
James Ford, MD |
Familial Cancer Service |
Eugene Hoyme, MD / James Ford, MD |
Genetic Counseling Appointments |
Nicolette Chun, MS Kerry Kingham, MS |
The Stanford Cancer Genetics Clinic provides a full range of genetic counseling, testing, screening, and research. The following sets out the components of the comprehensive genetic testing program.
Provider Education |
A high-risk genetics conference focusing on protocols, guidelines, and recommendations for patients with possible genetic predisposition for colorectal cancer is held bimonthly. Significant educational efforts by the staff of the Stanford Cancer Genetics Clinic are directed toward community physicians. Lectures are offered at community hospitals and within the Stanford Medical Center to familiarize physicians with cancer genetic risk indications and issues. Lectures are also provided to medical students, residents, and fellows in related fields, emphasizing the importance of cancer genetics in their practice. |
Patient Education |
Original pamphlets describing indications for cancer genetics referral and the evaluation procedure have been developed and are available for patient education. Copies of these booklets can be obtained at our Web site or by calling 650.724.4363 (Stanford Cancer Genetics-GENE). Additional written educational materials about the genetics of cancer are available at the Stanford Cancer Genetics website, www.stanford.edu/group/cgc/ and the Stanford Medical Center website, www.stanfordhospital.com. |
Referral |
Patients are referred from both physicians within the Stanford University Medical Center system as well as from community physicians in many disciplines, including oncology, surgery, gynecology, internal medicine, and gastroenterology. Physicians or patients can access Cancer Genetic Clinic Services by calling the clinic’s office number above. A genetic counselor is available to assist with medical intake and appointment planning. |
Identifying Eligible Subjects |
Individuals that may benefit from a referral include those with:
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Pre-test Counseling and Risk Assessment: |
The patient's personal and family medical history is obtained by phone at the time of scheduling and may be updated at the scheduled appointment to achieve the most accurate risk assessment. Documentation of relevant tumors and/or genetic test results may also be necessary. A consultation with the Cancer Risk Assessment Service includes:
A letter summarizing the details of our consultation and our recommendations is sent to the patients for their records. A copy of our consultation note will also be sent to the patient's physician only at the patient’s request. |
Informed Consent Procedures |
Patients who elect to proceed with genetic testing for cancer susceptibility will be required to sign a consent form either designed specifically by the laboratory performing the testing or a Stanford Medical Center approved consent form. |
Confidentiality Standards |
Documentation of the patient's consultation, as well as the patient's family history, is submitted to the hospital's main medical record under high security status. Written consent from the patient is required to access this record and is available only through the Cancer Genetics Clinic office or Medical Records supervisor. If genetic testing is elected, the results of testing will also be documented in the main records under high security status. Reports and test results are not accessible through the routine hospital computer system. Genetic testing results and documentation of a consultation will be disclosed to a third party only with the written consent of the patient. The National Cancer Institute (NCI) has granted a Certificate of Confidentiality, which protects patient information entered in our research database from any level of court ordered disclosure. |
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Testing |
For those patients electing genetic testing for cancer susceptibilities, most samples are sent for testing to a licensed commercial laboratory. If a patient participates in a research protocol, the qualifications and procedures employed by the testing lab will be discussed prior to testing. |
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Available Testing at or Through the Stanford Cancer Genetics Clinic |
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Laboratory Quality Assurance |
CAP/CLIA accreditation is current at all reference labs providing clinical tests for the Stanford Cancer Genetics Clinic. |
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Test Result Interpretation |
The test result is interpreted by the physician and genetic counselor involved with the patient's consultation. The result is interpreted based on the findings of the laboratory, published information about the mutation and condition, and the patient's personal and family history. |
Post-test Counseling |
The results of genetic testing are shared with the patient in person during a follow-up disclosure session. Information about the implications of the results and recommended screening and follow-up is discussed. |
Cancer Screening |
Recommendations for early detection and prevention of cancer are provided. Recommendations are based on a combination of evidence and empiric data, expert opinion, consensus statements, and take into account the patient's personal and family history. Specific screening protocols have been devised for certain cancer susceptibility syndromes. |
Medical and Surgical Management |
Patients may be referred to the gynecology, breast surgery, radiology, gastroenterology, and general surgery clinics at Stanford where they are offered state-of-the-art treatment options, including the opportunity to enroll in a clinical trial, if eligible. Recommendations can also be made for medical and surgical management outside the Stanford system. |
Psychological and Supportive Services |
Professional and peer support referral is often facilitated through the Cancer Genetics Clinic. |
Research
Identifying New Genes |
Studies are underway to identify genetic factors associated with cancer development among high-risk cancer families enrolled in our clinics. Clinic patients may voluntarily participate in the tissue and DNA banking program that will be used to identify and confirm the existence of new cancer genes and genes that modify cancer risk. |
Implementing Chemoprevention Trials |
Chemoprevention trials are underway for breast and colon cancer syndromes. |
Discovering Clinical Treatments for Genetic Disorders |
MRI and ductal lavage screening procedures are available for women at high risk for breast cancer. The sensitivity and specificity of these screening procedures are being monitored. The biological characteristics of premalignant changes identified by these methods are being studied using advanced genomic and proteomic techniques of gene expression. MSI (microsatellite instability) is a characteristic of tumors associated with the most common form of inherited colon cancer, HNPCC. We are studying HNPCC tumors for any correlation between MSI status, expression of DNA repair gene, and patients’ response to various chemotherapy trials in an effort to define the most effective treatments for HNPCC related cancer. We are collaborating with investigators in Vancouver, B.C. and the International Gastric Cancer Linkage Consortium to explore the role of E-cadherin and DNA repair genes in familial gastric cancer. |
Tracking Long-Term Results of Prophylactic Surgeries, Medical Surveillance Choices, and Preventative Interventions |
The clinic maintains an off-net, secured, encrypted database to track both genetic and environmental cancer risk factors and the efficacy of surveillance and treatment options for patients who voluntarily enroll in this project. |
Participating in Familial Registries or National Registries |
Participation in numerous familial cancer registries is available through our clinic. |
Educational Outreach
Education and Training |
The Stanford Program for Applied Cancer Genetics has a substantial commitment to education and training of primary care physicians. One aspect of this effort involves an education and outreach project to primary care physicians in affiliated health centers that provide services to a substantial number of patients from traditionally under-served groups. Ultimately, the Stanford Program for Applied Cancer Genetics envisions a variety of educational interventions, including print media, Web-based education, and presentations by program personnel, both at community hospitals and within the Stanford Medical Center. |
Quality Assurance |
Our genetic counselors are certified through either the American Board of Genetic Counselors or the American Board of Medical Genetics. Clinic cases are reviewed at weekly conferences to ensure consensus among experts. |
Last updated: 2/20/2008
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NCCN 1st Annual Forum: Innovative Diagnostics & Therapeutics in Cancer Care™ |
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