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General Information
TreatmentMultidisciplinary Clinics
Stem Cell Transplant Program Hematology-related diseases, leukemia, lymphoma, multiple myeloma, and renal cell diseases are treated using autologous, tandem autologous, and allogeneic transplants as appropriate. Alternative/Complementary Medicine Complementing the treatment and medical care provided at Huntsman Cancer Institute, the Linda B. and Robert B. Wiggins Wellness Center offers programs that address the physical and emotional needs of patients and their families during and after cancer treatment, including personalized exercise programs and nutritional advice from a registered dietitian, bone health and osteoporosis program, acupuncture for pain and nausea relief, and YourStory, a personal history recording service. Cancer Prevention and ScreeningHCI’s Patient and Public Education staff present cancer prevention programs and teach smoking cessation classes throughout the year in various community settings, and provides training for smoking cessation facilitators statewide. Close to 500 people benefit annually from free skin cancer screenings provided by HCI. Support ServicesHCI offers support groups for patients, survivors, and their families on site, as well as referring people diagnosed with cancer to community groups. HCI’s social workers participate in the multidisciplinary programs to assess each patient’s psycho-social issues with cancer and cancer treatment. Supportive CarePain Service HCI Pain Medicine and Palliative Care Services Home Care/Hospice Service Home Care/Hospice Service is provided through community agencies. Nutrition Service Registered dietitians are available for inpatients and outpatients with special dietary needs. The Linda B. and Robert B. Wiggins Wellness Center offers patients free personalized nutritional advice from a registered dietitian, both walk-in and by appointment. Rehabilitation Service HCI offers rehabilitation services for cancer patients, as well as fitness training individually designed for cancer patients through the Linda B. and Robert B. Wiggins Wellness Center. Cooperative Group Membership
Clinical and Research EffortsAdult Oncology Program*
*Fiscal year 2005 Huntsman Cancer Institute at the University of Utah
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Special Expertise |
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Pediatric Hot Line |
801.662.4700 |
General Information |
801.662.4700 |
Referring Physician Hot Line |
801.662.4700 |
Location |
Salt Lake City, Utah |
Physical Plant |
Primary Children’s Medical Center is a freestanding children’s hospital physically connected to the University of Utah Hospital and Huntsman Cancer Institute. |
Outreach Clinic |
Outreach education programs and limited clinics are held throughout the Salt Lake Valley and the Intermountain West. |
Financial Assistance |
Financial counselors at Primary Children’s Medical Center help families assess eligibility and apply for financial assistance. Limited funding resources are available to assist eligible patients from the Intermountain West. |
Travel Assistance |
Huntsman Cancer Institute’s Cancer Learning Center has information about national programs that assist with travel. Transport teams can assist emergent and critical patients requiring special transport within the Intermountain West. 888.424.2100 |
Lodging |
A Ronald McDonald House is located near Primary Children’s Medical Center. Some local hotels offer special rates to families of children with cancer or with special needs. |
Social Support |
Educational resources are offered to staff, local care providers, families, patients, and local community members. Sibling sessions educate and troubleshoot issues with siblings of children with cancer. Age- and disease-specific group activities are also available, such as a summer camp for cancer patients and their siblings at a nearby facility, winter sports, and skiing programs. Pediatric oncology social workers exclusively treat children diagnosed with cancer or blood disorders. They offer preventive evaluation and care as well as crisis intervention. Initial evaluations, assistance programs, and ongoing services are available to all patients and their families. Social workers can refer patients to both national and local community resources. |
Home Health Care |
The Pediatric Oncology Comprehensive Care Team, in collaboration with local care providers, manages home care. With the exception of insurance-specific contracts, patients may choose from a variety of home care companies offering services in their geographic location. |
Ages Treated |
From birth to age 21 years. |
Pediatric Oncology Director |
Richard S. Lemons, MD, PhD |
Operate Multidisciplinary Teams |
Multidisciplinary teams and clinics are an integral part of the Pediatric Oncology Program. Huntsman Cancer Institute works in collaboration with Primary Children’s Medical Center to offer specialty clinics for patients with brain tumors, high-risk sarcomas, and high-risk leukemias. These multidisciplinary clinics consist of specialists from areas involved in the patient’s management, including the nurse practitioner, pediatric oncologist, oncology social worker, nurse specialist, dietician, pharmacist, and oncology nurses. Pediatric oncologists, radiation oncologists, neurosurgeons, neurologists, developmental neuropsychologists, nurse practitioners, oncology nurses, dieticians, child life specialists, and social workers attend each comprehensive brain tumor clinic. |
Cooperative Group Membership |
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Activities in Cooperative Group |
Participation on COG committees:
Oncologists are principal investigators on numerous studies including the relapsed ALL committee. |
Average Number of Pediatric Clinical Trials |
80 |
Pediatric Clinical Trial Coordinator |
Phillip Barnette, MD |
Phase I Coordinator |
Richard S. Lemons, MD, PhD |
The physicians and support staff of the Pediatric Oncology Program and the Huntsman Cancer Institute Center for Children have an active basic clinical and translational research program. Four of the division members have extramurally funded basic laboratory research programs with the majority of their time spent in laboratory research activities. Areas of research include:
Translational research projects focus on high-risk, relapsed, and resistant acute leukemias, brain tumors, and high-risk and metastatic sarcomas. These include studies of gene expression, apoptosis, and regulation of cellular differentiation. Clinical trials include local institutional, multi-institutional, and cooperative group trials with emphasis on novel clinical protocols in childhood brain tumors, relapsed or resistant acute leukemias, and relapsed sarcomas.
Acute Lymphoblastic Leukemia (ALL)
Pediatric oncologists have developed and lead the Children’s Cancer Group high-risk, relapsed, and resistant ALL treatment protocols. Oncologists participate in research projects to study the biology and genetics of high-risk ALL.
Acute Myeloid Leukemia (AML)
Oncologists s tudy the biologic properties of specific types of AML to identify prognostic and risk factors. Treatment protocols using both related and unrelated donor bone marrow transplantation are available.
High Risk Leukemias and Lymphomas
This specially designed, high-risk clinic is staffed by a comprehensive team to identify, treat, and manage the care of high-risk leukemias and lymphomas, including relapsed, resistant, or high-risk patients.
Brain Tumors
Oncologists have developed novel treatment protocols for childhood brain tumors. Some of the treatment protocols are local institutional trials and others are limited institutional or collaborative group trials; all treatments incorporate biologic and genetic studies to improve understanding of the pathogenesis of brain tumors.
Solid Tumors and Sarcomas
Local institutional, multi-institutional, and cooperative group clinical trials are available for childhood sarcomas. Intensive therapeutic treatment plans are used for the treatment of metastatic or high-risk (metastatic, recurrent, or resistant) tumors including osteosarcoma, Ewing’s sarcoma, rhabdomyosarcoma, neuroblastoma, primitive neuroectodermal tumors, undifferentiated, synovial, and other types of sarcomas.
New and Experimental Therapies
The Pediatric Oncology Program is an NCI-approved Phase I and II institution. Phase I and II therapies and chemotherapeutic agents are available to eligible patients.
Intensified Therapies for High-Risk Patients Utilizing Peripheral Stem Cell Rescue or Bone Marrow Transplantation
Treatment plans and biologic studies are used to treat high-risk patients with resistant, relapsed, or high-risk childhood cancers. Autologous, allogeneic, matched unrelated donor, and cord blood transplants are performed within the Pediatric Oncology Program. In addition, peripheral stem cell rescue is routinely available in conjunction with an increasing number of clinical protocols.
Long-Term Follow-Up
After completing therapy, patients undergo long-term follow-up that may include psychological, psychosocial, intellectual, behavioral, and physical evaluations.
Percent of children treated in each age range
Age Range |
0-1 |
2-5 |
6-12 |
13+ |
Percent Treated |
3% |
30% |
35% |
32% |
Pediatric Oncology Program, 2005
No. of Inpatient Beds |
No. of Admissions |
Average Length of Stay(days) |
No. of New Outpatients |
Total Outpatient Visits |
No. of Bone Marrow Transplants |
No. of Oncologists |
232 |
700 |
5.0 |
350 |
7,300 |
28 |
9 |
Huntsman Cancer Institute offers genetic counseling services through fee-for-service and research clinics to those who have a personal or family history of cancer. Clients can consult specialty physicians and genetic counselors for genetic risk assessment, counseling, and testing in the Family Cancer Assessment Clinic. The current focus includes breast, colon, and pancreas cancer and melanoma. People who meet eligibility requirements may receive invitations to participate in a research clinic investigating their cancer type.
Location |
2000 Circle of Hope |
Family Cancer Assessment Clinic To schedule appointments |
Saundra S. Buys, MD; Randall Burt, MD 801.587.9555 |
High Risk Breast Cancer Clinic To schedule appointments |
Saundra Buys, MD, Medical Director 801.585.3525 or toll free 800.936.6343 |
Familial Colon Cancer Clinic To schedule appointments |
Randall Burt, MD, Medical Director 801.581.8405 or toll free 800.650.9071 |
Familial Melanoma Research Clinic To schedule appointments |
Sancy Leachman, MD, Medical Director 801.585.0595 or toll free 866.378.4840 |
High Risk Pancreas Cancer Clinic To schedule appointments |
Douglas Adler, MD, Director Contact the Family Cancer Assessment Clinic at 801.587.9555 |
Huntsman Cancer Institute provides a full range of genetic counseling, testing, screening, and research. The following sections outline the components of the comprehensive genetic testing program.
Physician and Community Awareness |
Huntsman Cancer Institute publishes several newsletters that address cancer genetics topics, including inherited breast, colon, and pancreas cancer and melanoma. In addition, the physicians and genetic counselors associated with the clinics conduct in-services, grand rounds, and presentations in other professional forums. The Huntsman Cancer Learning Center offers patients and the general public information on cancer, risk factors, prevention, treatment, and the importance of screening. The HOPE Guide presents current, accurate cancer information online at www.hopeguide.org. Huntsman Cancer Information Service is a toll-free cancer information line at 888.HCI.2100. |
Identify Eligible Clients/Referral |
Clients and families may be self-referred, referred by physicians, or referred from other research projects or clinical trials. Each clinic coordinator assesses inquiries for research eligibility criteria. |
Client Education |
Eligible participants in the research clinics receive personalized screening recommendations and information about other available risk reduction options.
The HOPE Guide presents current, accurate cancer information online at www.hopeguide.org. Huntsman Cancer Information Service is a toll-free cancer information line at 888.HCI.2100. |
Pre-test Counseling |
All individuals receive counseling before genetic testing. The counselor assesses the person’s expectations and perceptions regarding the risk of developing cancer, especially with respect to learning genetic status. The counselor then reviews the individual’s family history and discusses prevention, early detection strategies, and general approaches to risk assessment. Genetic counseling for clients enrolled in the research clinics has two components: an educational session incorporated into the orientation session, and an individual session during which each client meets privately with the genetic counselor. Pre-test sessions are identical for research and fee-for-service clients. Research participants also complete a family history form prior to their appointment; this information is regularly reviewed and updated by research registry staff members. Some clients also complete baseline questionnaires to assess a number of psychological measures.
This session also covers the known risks, benefits, and limitations of genetic testing. |
Informed Consent Procedures |
In the fee-for-service clinics, the informed consent process focuses on the issue of DNA testing; clients sign a consent form before blood is drawn for testing. In the research clinics, specific consent is obtained several times. Initially, clinic staff reviews information about the research process with the client and obtains consent specifically for that purpose. Each of the research clinics has unique aspects which may require additional consent processes. Clinic staff offers opportunities to understand the nuances of consent to the participants before signing any document. If the participant is a genetic testing candidate, additional discussion precedes separate consent for clinical testing. |
Confidentiality Standards |
Both clinical and research services comply with all HIPAA guidelines; in addition, the research projects maintain participant confidentiality. Clinical genetic testing conducted under the auspices of a research project generates no billing, and the clinic collects no information about insurance carriers for these participants. All genetic records are stamped with the following statement to maximize confidentiality: “Huntsman Cancer Institute is releasing this information to the health care professional with expressed authorization from the patient. Before disclosing this information to any other party or entity for any reason, please obtain direct written consent from the patient.” Research clinic clients are notified that the genetic records delivered to their personal doctors bear this stamp and are advised to be alert if others ask them to sign release forms. Genetic records are secured in a locked room separate from the main medical records. Data maintained on the computer database are also secured in a password-protected file available only to select staff members. |
Testing |
Myriad Genetics Laboratory performs testing for the BRCA1 and BRCA2 gene mutations. For other genes that might predispose individuals to an increased risk for developing breast, ovarian, colon, or other types of cancer, a variety of clinical commercial laboratories are used. Typically, the genetic counselor working with the family researches available laboratories before pre-test counseling and consults the medical directors to assure that appropriate testing requests are made. |
Laboratory Quality Assurance |
The commercial laboratories used for genetic testing are CLIA-certified and CAP-approved. Their quality control policies and procedures provide surveillance and quality assurance of the laboratory tests. |
Test Result Interpretation |
Cancer risk is estimated based on genetic laboratory findings, published information about the given mutation or condition (including that from database repositories), and the patient's personal and family history and lifestyle factors. |
Post-test Counseling |
Once results are available, the genetic counselor discusses the following in a post-test counseling session:
Additional follow-up genetic counseling is available at the client’s request. |
Cancer Screening |
Counselors and physicians provide information about screening options specific to the patient during a post-test counseling session. |
Medical and Surgical Management |
During a post-test counseling session, counselors provide both carriers and noncarriers with information about medical management choices, including the option of surgical intervention or chemoprevention, as appropriate. |
Psychological and Supportive Services |
Referrals are made to community support groups. In addition, if anyone meets clinical criteria for major depression or general anxiety based on a pre-counseling questionnaire, they are referred outside the high-risk clinic for further evaluation. |
Huntsman Cancer Institute participates in many research studies that involve members of genetically higher risk families and encourages clients to participate when they are eligible, willing, and able. Currently more than 50 different research projects utilize the research resource available through the High Risk Cancer Clinics, and new projects are introduced frequently. The research includes basic science to understand the molecular nature of the genes, translational research, and screening and chemoprevention trials. In addition, some participants may be eligible for behavioral studies. Each clinic has policies that determine eligibility and invite clients into trials.
Participating in Familial Registries or National Registries |
All clients in the High Risk Breast Cancer Clinic are enrolled in the Breast Cancer Family Registry. Huntsman Cancer Institute is one of six international sites collecting information and blood from families with a history of breast or ovarian cancer. Clients in the Familial Colon Cancer Clinic are invited into the Familial Colon Cancer Registry. The Familial Pancreas Cancer Registry enrolls and collects information from people who have had pancreas cancer and families with a history of the disease. The Melanoma Research Registry enrolls individuals with a personal or family history of melanoma, numerous moles, and/or atypical moles. All four registries serve as educational resources for individuals at risk for cancer and as a referral source for researchers. Individuals with known syndromes or strong family histories of cancer who were seen in the outpatient fee-for-service clinic are invited to enroll in an available registry as appropriate. |
Quality Assurance |
Genetic counselors review cases weekly with the medical directors, other counselors, and lab directors as necessary. |
Last updated: 2/11/2008
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NCCN 1st Annual Forum: Innovative Diagnostics & Therapeutics in Cancer Care™ |
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