|
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
General Information
TreatmentMultidisciplinary Clinics:
Stem Cell Transplant Program
Stem cell transplant may also be considered for patients with the following conditions:
There are three types of transplant, based on donor source:
Alternative/Complementary Medicine Wellness Institute – 312.926.WELL (9355) or wellness@nmh.org Center for Integrative Medicine (CIM) – 312.926.2224 CIM offers the following integrated services:
Late Effects Clinic – 312.695.4979 Geriatric Oncology Program – 312.695.0137 Cancer Skin Care Program – 312.695.8106 Cancer Prevention and ScreeningRoutine screening services are as follows: In addition to routine screening services for breast, cervical, prostate, and colorectal cancer, the Cancer Center also has research-based screening and early detection programs that include:
Wellness Institute – 312.926.WELL (9355) Community screening and education programs are sponsored by the hospital on an ad hoc basis, often at reduced cost. Included are breast, prostate, gynecologic, colorectal, and skin cancer programs. Support ServicesNorthwestern Memorial Hospital provides a range of support groups for cancer patients, including a general support group and specialized groups for breast and prostate. In addition, the hospital's Department of Case Management, comprised of Pastoral Care, Nurse Discharge Planning, and Social Work staff, provides a full range of counseling services for inpatients, including referral for psychiatric evaluation/intervention as needed. For outpatients, the Cancer Center provides a psychosocial care team comprised of a clinical psychologist, social worker, dietician, and palliative care/symptom management nurse. A wide range of patient education programs are sponsored by the Cancer Center each year, typically focused in specific disease areas. The Cancer Center Web site, www.cancer.northwestern.edu, provides information for patients on an ongoing basis, and an extensive Health Learning Center is also available on site, providing a comprehensive range of print and video resources for cancer patients. A Health Learning Center Satellite, which is staffed by a full time patient educator, is located in the outpatient clinical cancer care facility. Additionally, the American Cancer Society, Illinois Division, has selected the Cancer Center as a primary site for its Patient Navigator Program, a service that provides information, resources, referral, and support. A multidisciplinary psychosocial care team including a clinical psychologist, social worker, dietician, and symptom management nurse is available to all patients to address survivorship issues. The Cancer Center also has a Patient Advocacy Committee comprised of survivors and key staff to provide input on a wide range of programs and activities. In addition, the Cancer Center signature event is the Cancer Survivors Walk and Celebration, on the first Sunday in June. This event annually draws approximately 4,000 participants and serves as a major means of recognizing survivors and raising public awareness about cancer risk. Supportive CarePain Service The Anesthesiology Pain Medicine Center – 877.926.4NMH (4664) Palliative/Supportive Service Home Care/Hospice Service Nutrition Service Patients seen only in the ambulatory setting also have registered dietician services available as part of the psychosocial care team referenced above. Rehabilitation Service – 800.354.REHAB (7342) Cooperative Group Membership
Clinical and Research EffortsAdult Oncology Program *
*FY07 (9/1/06–8/31/07) The Robert H. Lurie Comprehensive Cancer Center of Northwestern University
|
|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
Ages Treated |
The majority of our patients are 18 years of age and younger, but we do provide care for young adults with pediatric diagnosis and congenital disorders. |
Pediatric Hot Line |
800.KIDS.DOC (800.543.7362) Children's pediatric nurses are available Monday through Friday from 8:30 AM to 4:30 PM to personally answer questions. When calling at other times, please press * to leave a message and Children's will call back. |
Referring Physician Line |
800.540.4131 |
KIDSDOC@childrensmemorial.org (All e-mails are answered within 72 hours.) |
|
Location |
Children's Memorial Hospital is located at The main telephone number is 773.880.4000. |
Physical Plant |
Children who require an inpatient stay for cancer are admitted to a state-of-the-art treatment complex featuring a 16-bed inpatient unit for patients with a variety of cancers and blood diseases, and a six-bed stem cell unit for inpatients. The 22-bed unit is specially designed, staffed, and equipped to deliver the most sophisticated level of treatment to children of all ages. To assist with infection control, the unit maintains its own water and air filtration system. There is a playroom and parent lounge located on the inpatient unit. Outpatient care is provided in an attached Ambulatory Care Center, as well as a Day Hospital. The Children's Center for Cancer and Blood Diseases has a six-bed ambulatory stem cell unit for outpatients, a 14-bed Chicago White Sox Day Hospital used for chemotherapy and other infusions, and a dedicated hematology laboratory. The stem cell transplant unit is a state-of-the-art facility with six unidirectional, positive-pressure laminar airflow isolation rooms. Each room has intensive care monitoring capabilities. The Brown Family Life Center is a respite area devoted to inpatients and their families. The colorful curving walls, aquarium, and central skylight were designed to be a family-friendly distraction from hospital life. The center is equipped with toys, games, and computers and is the focal point of many Child Life activities for patients. |
Travel Assistance |
Social work staff provides travel assistance and coordinates transportation. United Airlines assists by providing free or substantially discounted tickets for patients and family members on a case-by-case basis. |
Lodging |
The Ronald McDonald House near Children’s Memorial Hospital provides a temporary "home away from home" for families of children receiving treatment. The 21-bed facility is the second oldest Ronald McDonald House in the nation and is conveniently located two blocks from the hospital. For more information, call the House at 773-348-5322. Families of children undergoing stem cell transplantation also have access to the Kohl’s House, which is specifically designed for transplant patients and their families. This eight-bed facility is located a half block from the hospital and is available for all patients undergoing transplantation. Social workers can assist families with reservations and admissions. Kohl’s House Guest Relations can be reached at 773-975-8881. Children's Admitting Department can help make arrangements for hotel accommodations within the area. The Admitting Department can be reached at 773-880-4700. Social workers also assist in lodging arrangements for families. |
Social Support |
Family Support Services, consisting of clinical social workers, child-life specialists, a chaplain, and the Friends of the Family coordinator, addresses the psychosocial needs of pediatric cancer patients and their family and are a core part of the multidisciplinary team. Social workers provide assistance in helping families cope with a child's hospitalization and illness, crisis situations, and provide information and referrals to community agencies and other services focused on child and family wellbeing. Child Life specialists are trained to assess a child's strengths and needs, and offer developmental activities specially designed for hospitalized children. Child Life specialists lead regular activities for children during the day, evening, and on weekends. Parents and staff can call the school coordinator to learn about options to continue schooling throughout hospitalization and following discharge. Tutoring and educational enrichment programs are also available. Support groups for the patient, parents, and family are available, including:
|
Financial Assistance |
The need for financial assistance is evaluated on a case-by-case basis. For more information, call 773.880.4273. For questions about financial coverage while a child is in the hospital, call Monday through Friday, 7 AM to 6 PM; Saturday, 7 AM to 3:30 PM. |
Home Health Care |
The teams work closely with home health agencies experienced in pediatric oncology and stem cell transplantation. |
Acceptance Criteria |
Acceptance is based upon patient’s specific clinical need and age. |
|
Division Head, |
Morris Kletzel, MD |
Multidisciplinary Teams |
Children’s Memorial uses a comprehensive, family-centered, multi-disciplinary approach to care. The primary care team approach is coordinated by clinicians, surgeons, scientists, nurses, nutritionists, dietitians, advanced practice nurses, and child and family support staff—all of whom are solely dedicated to the care of children. Core components of the multidisciplinary team are certified Child Life specialists, licensed clinical social workers, a trained chaplain, and Friends of the Family volunteer coordinator. |
Cooperative Group Membership |
|
Cooperative Group Activities |
Participation in COG committees include:
Oncologists are principal investigators on numerous studies. |
Average Number of Pediatric Clinical Trials |
75 |
Pediatric Clinical Trial Coordinator |
Yolanda Santiago, CCRP |
The medical center is a hub of oncology/hematology research, leading efforts ranging from molecular genetic studies of certain childhood cancers, to the pioneering use of stem cell transplantation in treating and curing sickle cell disease, to the study of a multi-drug–resistant gene in cancerous brain tumors.
The faculty and nursing staff of Children’s Memorial Hospital are involved with several significant research efforts, primarily in the areas of bone marrow/stem cell transplantation, neuro-oncology, and neuroblastoma biology. Faculty are actively involved in biologic research on neuroblastoma, as well as some early investigation into antiangiogenesis. Research is also being pursued relative to cell differentiation in the laboratory. In addition, the stem cell laboratory continues to make major advances in support of the clinical program in the areas related to stem cell procurement, transplantation, and engraftment. These include assessment of engraftment via molecular immuno-genetics, minimal residual disease testing for malignancies including leukemias and neuroblastoma, and the molecular HLA Typing Laboratory.
Children’s Memorial Research Center (CMRC) is an integral component of the Children’s Memorial Medical Center. CMRC has evolved as the Midwest’s only institution devoted exclusively to pediatric medical research. The six core programs of CMRC—cancer biology and chemotherapy, immunobiology, human and molecular genetics, neurobiology, developmental systems biology, and statistical sciences and epidemiology—represent an important direction in contemporary biological investigation in medicine.
Brain Tumors
In addition to brain tumors, Children's experts treat tumors of the spinal cord and the spine itself. Children’s Memorial Hospital treats more than 85 percent of the patients with pediatric brain tumors in the Chicagoland region.
Members of the Division of Pediatric Neurosurgery are involved in basic research in cooperation with the Neurobiology and the Brain Tumor Research Program at Children's Memorial Research Center (CMRC).
The Brain Tumor Clinic provides a comprehensive, multi-disciplinary visit in which experts in pediatric neurosurgery, pediatric oncology, pediatric neurology, pediatric radiation oncology, and social services can examine youngsters. Representatives from physical therapy, audiology, and other pediatric subspecialties are also available to see patients in this clinic. Each patient's neuroradiographic studies are available for review on-site at this weekly clinic, making it easy for family members to ask all the questions they need to in order to fully understand their child's illness and make educated decisions regarding his or her care.
Children’s Memorial uses a multidisciplinary approach that gives equal importance to tumor surveillance and neurological, neuroendocrine, and neuropsychiatric issues. Through this teamwork, Children’s Memorial continues to make progress towards innovative therapies that maximize survival while minimizing the sequelae faced by these patients and their families.
Currently, Children's Brain Tumor Center treats well over 100 new patients per year.
Leukemia
Children with leukemia comprise the largest single subgroup of patients with oncology diagnoses at Children’s Memorial Hospital. Currently, the overall prognosis for children with leukemia is quite good with certain subgroups having outstanding survival while others are still suboptimal. The majority of patients are treated on cooperative group protocols that are currently directed at both maximizing cure rates and minimizing toxicities.
For children with lymphocytic leukemia, a significant portion of the treatment can be administered in the clinic so children spend less time on the inpatient unit. For children with non-lymphocytic leukemia and certain high-risk subtypes of lymphocytic leukemia, the majority of the treatment occurs on the inpatient service. The efforts at Children’s Memorial Hospital are not only to refine treatment but to try to maintain, as much as possible, the normalcy of daily and family life.
A multidisciplinary approach to the wellbeing of the child, including psychosocial issues, long-term follow-up, and acute treatment issues, comprises the core of the efforts in this area.
Long-Term Follow-Up Clinic
Approximately 75 percent of children diagnosed with cancer become long-term survivors, and more than 1,300 children, adolescents, and young adults are treated through the STAR (Survivors Taking Action & Responsibility) Program at the Children's Memorial Hospital Long-Term Follow-Up Clinic.
The program follows patients beginning five years after diagnosis and extends until the patient is 21 years of age. At this time, survivors are transitioned to our adult health care partners at Northwestern Memorial Hospital for follow-up in their long-term follow-up program. A typical STAR visit focuses on the physiologic and psychological issues facing childhood cancer survivors, including evaluation of growth and development, blood work, physical exams, and cardiac and nutritional assessment. Interest is also given to the psychosocial and academic status of the patients, and new screening tools are being used to elicit information in these areas. Education is provided to patients and their families about their medical history; healthy living habits are promoted; and health maintenance is taught.
Liver Tumors
The distribution of childhood liver tumors diagnosed and treated at Children’s Memorial Hospital include a wide variety of lesions. The most commonly encountered tumor is hepatoblastoma, and two thirds of these present with advanced disease (Stage III or IV). The majority of these children are placed on multi-agent treatment protocols of the Children’s Oncology Group. The introduction of the liver transplant program at Children’s in 1997 has provided a new dimension of treatment for these patients. Our hepatobiliary transplant surgeons have the ability now to resect many lesions previously considered “unresectable,” and if resection remains unobtainable, liver transplantation is sometimes an option for therapy.
Lymphoma
The majority of patients are treated on cooperative group protocols. Current prognoses for nearly every subgroup of patients with lymphoma, including those with advanced disease, are quite good. Children’s Memorial Hospital strives to improve the cure rates for certain high-risk groups by increasing and refining treatment intensity. Treatment is administered in both inpatient and outpatient settings. The multi-disciplinary faculty at Children’s Memorial Hospital have a long-standing and significant interest in all aspects of lymphoma, including lymphomas that have a more unusual presentation or course and those lymphomas associated with the HIV infection.
Neuroblastoma
Innovative, research-based treatment protocols have been developed at Children's for patients with neuroblastoma. High-dose chemotherapy with autologous tandem stem cell rescue is performed on an outpatient basis. With this procedure, Children's has become the region's leading provider of care to children with neuroblastoma.
Children’s Memorial Hospital has very active research efforts directed at both laboratory aspects of the biology of this disease and at clinical treatment. Many children with neuroblastoma are treated on cooperative group protocols. The current thrust of these protocols is to minimize therapy in early stage disease while attempting to increase the cure rate for patients with more advanced disease. Currently there is an open in-house study for the treatment of patients with advanced neuroblastoma that includes a multidisciplinary approach combining surgery, chemotherapy, radiation therapy, and biologic agents. The care of this subgroup of children is carefully coordinated between the oncologist, radiation therapist, surgeon, and the bone marrow/stem cell transplant team.
In addition, extensive laboratory research is directed at investigating biologic aspects of neuroblastoma.
Radiation Oncology
Children’s Memorial Hospital patients receive their radiation oncology services at Northwestern Memorial Hospital. There are two radiation oncologists with a specialty in pediatric care. Our radiation oncology program employs state-of-the-art technology to maximize cure and minimize complications in the growing child. The technology currently includes fractionated stereotactic radiation, radiosurgery, 3-dimensional conformal treatment planning, total body irradiation, hyperthermia, and both low- and high-dose brachytherapy. Fractionated stereotactic radiotherapy allows delivery of the maximal doses required while sparing as much normal developing brain as possible. This capability has been pioneered at Children’s Memorial and is one of the primary advances in pediatric radiation oncology.
Retinoblastoma
Children’s Memorial Hospital is a leader in innovative multimodality therapies. The treatment of both sporadic and inheritable forms of retinoblastoma revolves around saving sight and minimizing long-term sequelae of past therapies, including secondary cancer. Presently, Children’s Memorial Hospital employs a chemotherapy and local ophthalmologic control (cryotherapy, photocoagulation, etc.) in an attempt to preserve sight and avoid enucleation.
Soft Tissue Sarcomas
Children’s approach to these patients is multidisciplinary, including surgery, radiation therapy, and chemotherapy. The treatment is adapted to the tumor type and stage of diagnosis, and each patient is carefully followed for response to therapy and appropriate timing of the various modalities of treatment. The majority of patients are initially treated on national intergroup protocols devised by multiple institutions across the country. Patients who do well are carefully followed in the Long-Term Follow-Up clinic for the management of late complications of their treatment.
A pediatric brachytherapy program has been established to obtain local control without amputation or other mutilating surgery in the treatment of pediatric sarcomas.
Stem Cell Transplantation
The program is a member of the Northwestern University Affiliated Transplant Center (NUATC), The Robert H. Lurie Comprehensive Cancer Center at Northwestern University, The Children’s Oncology Group (COG), and the Pediatric Blood and Marrow Transplant Consortium (PBMTC). Each of these entities sponsors clinical trials in pediatric transplantation and correlates with activities in the laboratory.
Children's Memorial Stem Cell Transplant Program achieved initial accreditation from the Foundation for Accreditation of Cellular Therapy (FACT) in 1999. This program was the seventh institution nationwide and the first freestanding pediatric institution to achieve this milestone. The program is also accredited by the American Association of Blood Banks (AABB).
An important feature of the program is a laboratory facility at the cutting edge of processing stem cells, graft engineering, detecting tumor cell contamination of the graft, HLA typing, stem cell expansion, and detection of engraftment by molecular techniques. The program also has its own state-of-the-art HLA laboratory capable of the highest detection of alleles via molecular sequencing. Lab research is primarily in the areas of stem cell processing, stem cell expansion, detection of minimal residual disease, and characterization of mesenchymal cells.
The Ambulatory Stem Cell Unit (ASCU), consisting of four HEPA-filtered, positive-pressure rooms with state-of-the-art monitoring equipment, is devoted exclusively to stem cell transplant patients and their families. This allows Children's to conduct more innovative procedures and provides greater convenience and comfort to patients and families. The rooms are also equipped to provide patients and families the ability to connect to work and school via the Internet.
The Stem Cell Transplant Program was started in 1992. In 1996, Children’s Memorial Hospital became an approved National Marrow Donor Program and performs matched, unrelated, and umbilical cord blood stem cell transplants, as well as autologous transplants.
Children's Memorial Hospital is a leader in the treatment of children in the Chicago area diagnosed with leukemia, solid tumors, and blood diseases.
As of October 2007, a total of 790 stem cell transplants had been performed:
Transplant Type |
Number Performed |
Percent of No. Performed |
Autologous |
369 |
47% |
PBSC |
336 |
91% |
BM |
30 |
9% |
BM+PBCS |
1 |
< 1% |
Allogeneic |
421 |
53% |
PBSC |
138 |
33% |
BM |
149 |
36% |
Cord Blood |
134 |
31% |
Percent of children treated in each age range
Age Range |
0-1 |
2-5 |
6-12 |
13+ |
Percent Treated |
18% |
29% |
31% |
22% |
Pediatric Oncology Program Fiscal Year 2007 (Hematology/Oncology Only)
No. of Inpatient Beds |
No. of Oncologists |
No. of Admissions |
Average Length of Stay(Days) |
Total Outpatient Visits |
No. of Stem Cell Transplants |
22 |
22 |
1,204 |
5.34 |
14,869 |
63 |
The Robert H. Lurie Comprehensive Cancer Center of Northwestern University offers cancer genetics services through two programs that meet on a weekly basis: the Cancer Genetics Program (CGP) and the Northwestern Ovarian Cancer Early Detection and Prevention Program (NOCEDPP). The goal of these programs is to provide a wide range of services to individuals who are concerned about the occurrence of cancer in their family. These services include cancer risk assessment, education about the genetic basis of cancer, discussions regarding the risks and benefits of genetic testing in a particular situation, recommendations for appropriate cancer screening and prevention, and information about opportunities for participation in research studies. The CGP is staffed by two oncologists and two board-certified genetic counselors, and the NOCEDPP is staffed by two geneticists and one board-certified genetic counselor. They both work closely with Northwestern's surgical, medical, radiation, and gynecologic oncologists, internists, nurses, and psychologists to provide comprehensive cancer genetic services. In addition to cancer genetic services, the NOCEDPP provides ovarian cancer screening to women at increased risk for ovarian cancer. The NOCEDPP is a research program that is dedicated to developing tests that will be effective in the detection of early stage ovarian cancer.
Location |
Chicago, Illinois |
Schedule Appointments |
Cancer Genetics Program Northwestern Ovarian Cancer Early Detection and Prevention Program |
The Robert H. Lurie Comprehensive Cancer Center of Northwestern University provides a full range of genetic counseling, testing, screening, and research. The following sets out the components of the comprehensive genetic testing program.
Physician and Community Awareness |
The genetics staff gives numerous educational talks each year to a wide range of audiences about the recent discoveries in cancer genetics and the process of genetic counseling and genetic testing. Presentations are given at various departmental meetings throughout Northwestern, grand rounds at several community hospitals, meetings of community-based cancer support groups and organizations, and local nursing conferences. |
Identify Eligible Clients/Referral |
Specialists in the Lynn Sage Comprehensive Breast Center and other such clinics refer patients when indicated to the CGP and NOCEDPP. In addition, both academically based physicians at Northwestern and private practitioners in oncology, surgery, and obstetrics and gynecology on staff at Northwestern have been contacted either directly or indirectly. When possible, a genetic counselor attends the weekly multi-disciplinary breast, gynecologic, and colon cancer conferences to identify patients that may be appropriate for genetic counseling based on their clinical and family history. Patients are also accepted on self-referral or as referrals from community physicians. |
Pre-test Counseling |
The CGP and NOCEDPP routinely provide genetic counseling services to both individuals and their family members. These services are available on a weekly basis. All individuals undergoing cancer risk assessment and genetic counseling through the Cancer Genetics Program are contacted by the genetic counselor by telephone prior to a formal appointment. The genetic counselor elicits the client's questions and concerns and provides an overview of the genetic counseling and testing process, including number of appointments, cost, possibility of insurance coverage, and confidentiality of information. Clients are encouraged to gather medical records documenting the occurrences of cancer in their family for accurate risk assessment, or at least confer with relatives to obtain details about cancer diagnoses. Information about reproductive history, environmental exposures, and medical history relevant to cancer risk is also gathered over the telephone. A preliminary pedigree is constructed based on telephone intake information and preliminary cancer risk assessment is performed. The initial genetic counseling appointment involves reviewing the family history and the client's personal history, discussing the client's cancer risk assessment, providing general education about the genetic basis of cancer and particular cancer susceptibility genes as appropriate for the family history, discussing options and recommendations for cancer surveillance and prevention, and exploring the psychosocial implications of a personal or family history of cancer. The staff oncologist performs a physical examination. For clients with family histories that are suggestive of inherited susceptibility, pre-test counseling is provided focusing on the benefits, risks, and limitations of genetic testing in their particular situation. A genetics consultation as described above is also a standard component of the NOCEDPP. The NOCEDPP is a research protocol and screening program available to women at increased risk for ovarian cancer (i.e. family history of ovarian cancer; a personal history of breast, colon, or gynecologic cancer; strong family history of breast, ovarian, colon, uterine, or pancreatic cancer; personal or family history of hereditary syndrome that predisposes to ovarian cancer). NOCEDPP research participants undergo semiannual ovarian cancer screening with transvaginal ultrasound, CA-125, and pelvic exam. A genetic risk assessment is routinely performed at their initial visit. The NOCEDPP also provides genetic risk assessment for clients who desire a genetic consult without research participation or ovarian screening. Components of pre-test counseling include the following items, as suggested by the American Society of Clinical Oncology:
|
Informed Consent Procedures |
Written informed consent is obtained from each client who elects genetic testing. For clients having genetic testing on a clinical basis, the consent form of the commercial CLIA-approved laboratory providing the specific test is used. For patients participating in research studies, consent forms are reviewed and approved by the Northwestern University IRB. Information included in the consent forms is covered in detail during pre-test genetic counseling. After reading the consent form, patients are specifically asked by the genetic counselor if they have any remaining questions or concerns. |
Confidentiality Standards |
No medical and family history information obtained by the Cancer Genetics Program or staff is part of the regular hospital medical records system. Individual records are kept in the office of the Cancer Genetics Program. Information contained in the cancer genetics charts is released only to the client, unless the client specifically directs, in writing, for information to be released to an outside party. Medical and family history information obtained through the NOCEDPP is part of the patient’s electronic medical record. However, such encounters are secured in a similar manner to psychiatry records. Electronic encounters through the NOCEDPP are restricted and accessible only by providers affiliated with the NOCEDPP; other Northwestern providers have no way of viewing NOCEDPP encounters. NOCEDPP records may be released to other providers only with permission from the client. |
||||||||||||||||||||
Testing |
For genetic testing for breast, ovarian, colon, and other hereditary forms of cancer, established laboratories with recognized expertise in the specific test are utilized. These services are used on an individual basis, focused on the specific gene test and the specific expertise of the testing facility. |
||||||||||||||||||||
Available Testing through Northwestern/Cancer Center |
Below is an abbreviated list of the tests that are available; we offer genetic counseling and testing for other conditions as well. While the CGP offers genetic risk assessment and testing for all hereditary cancer syndromes, the NOCEDPP focuses on syndromes that include increased risk for female cancers.
|
||||||||||||||||||||
Laboratory Quality Assurance |
Only CAP- and CLIA-approved laboratories are used for clinical genetic testing. |
||||||||||||||||||||
Test Result Interpretation |
All genetic test results are interpreted by the genetic counselor in light of the client's personal and family histories. Published literature, in combination with the client's own medical history, is used in assessing cancer risks for each client in light of positive or negative test results. Internationally available resources, such as mutation databases for specific cancer susceptibility genes, are utilized in interpreting some results. |
Post-test Counseling |
Interpretation and communication of genetic evaluation and testing is preferably conducted in person by the staff oncologist and genetic counselor. Sessions are usually one half hour, although on some occasions several visits are required. Detailed written summaries of the genetic counseling session are sent to each client. To ensure patient confidentiality, each client chooses if he or she wants the written summary sent to his or her physician(s). Patients who are not appropriate for or who do not elect genetic testing are encouraged to periodically contact the cancer genetics staff for updates on information that may apply to their family. For patients electing genetic testing, a written summary of the counseling sessions, test results, and meaning of the results for the client and his/her family is provided. |
Cancer Screening |
Cancer screening recommendations are provided based on the personal and family histories and results of genetic testing. Referrals are coordinated when necessary. Clients are informed that many of the screening recommendations for carriers of mutations in cancer susceptibility genes are currently based on expert opinion and may change as new information is gained through research. Clients are informed of the availability of clinical research studies on screening that may be appropriate for their situation. |
Medical and Surgical Management |
Options for cancer prevention such as prophylactic surgeries or use of chemopreventive agents are discussed with clients who have tested positive for a cancer susceptibility mutation or whose risk assessment without genetic testing suggests a significantly increased cancer risk. Clients considering prophylactic surgeries or chemoprevention are referred for a formal consultation with a surgical oncologist or medical oncologist, respectively, to discuss the benefits and risks of these options in more detail. |
Psychological and Supportive Services |
Individuals who appear to require additional supportive counseling before or after receiving genetic test results are provided with a referral to a clinical psychologist, psycho-oncologist, psychiatrist, or social worker, when necessary. Information about support communities is routinely provided for individuals with a family history consistent with hereditary cancer. |
The Cancer Center makes participation in research studies available to patients and families who meet the criteria for studies performed at Northwestern or at institutions across the country.
Identifying New Genes |
Northwestern is participating in ECOG's "Cancer in Siblings" research protocol, which aims to identify genetic characteristics shared by siblings who have been diagnosed with the same cancer. Sibling pairs who have been diagnosed with breast, colon, lung, or prostate cancer are eligible for participation. Families identified through the CGP and NOCEDPP who have unique constellations of cancer that are of interest to research groups at other institutions are made aware of opportunities for study participation. Families can often participate in off-site research studies by talking with the study coordinator over the telephone, completing a written packet of questionnaires and providing informed consent, and then providing a blood sample. Please note: Preliminary research studies such as these aimed at identifying new genes may not provide results back to study participants. Research test results may not impact clinical management for participants. |
Improving New Counseling Methods |
Northwestern’s graduate students in genetic counseling are responsible for conducting an original research project to fulfill requirements for the master of science degree. Typically, two to three projects each year focus on cancer genetic counseling issues. |
Improving Testing Methods |
The focus of the Northwestern Ovarian Cancer Early Detection and Prevention Program is to identify clinical and laboratory parameters useful in identifying ovarian cancer early in its initiation. Detailed family histories have been obtained and will be analyzed as part of the overall goal of early identification of ovarian cancer. |
Tracking Long Term Results of Prophylactic Surgeries |
The Cancer Center is developing a systematic way of tracking patient decision-making regarding prevention and surveillance options after genetic counseling. |
Studying Impact of Receiving Genetic Information On Health Related Outcomes |
Quality of life research has been initiated in the NOCEDPP aimed at evaluating the impact of receiving risk assessment information and participating in a multidisciplinary screening program on various attitudes about personal health and lifestyle. Additional studies in this arena are anticipated. |
Quality Assurance |
Each case, individual, or family is reviewed weekly during the Patient Review conference held by the staff of the Cancer Genetics Program. Each case is reviewed biweekly in the NOCEDPP. Each patient’s history and genetic counseling session is reviewed, risk assessment provided, and the patient’s choice of testing discussed. When necessary, difficult cases are reviewed (anonymously) with cancer genetics colleagues through the National Society of Genetic Counselor Cancer Special Interest Group e-mail discussion group. |
Training |
Northwestern University offers a graduate program in Genetic Counseling. This program accepts ten students per year and provides extensive clinical experience. The program is accredited by the American Board of Genetic Counseling. Northwestern also offers basic science doctoral programs at its Chicago campus, where students are trained in the labs of Cancer Center researchers. Post-doctoral opportunities are also available in the cancer center for basic science research related to cancer genetics. |
Last updated: 2/20/2008
|
NCCN 1st Annual Forum: Innovative Diagnostics & Therapeutics in Cancer Care™ |
|
|