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The Duke Tumor Registry

The mission of the Duke Tumor Registry is to contribute to the knowledge of cancer prevention, diagnosis and treatment and to contribute to improvements in cancer patient management through the collection of complete, accurate and timely cancer data and by ongoing follow-up of patients. The registry provides cancer incidence, treatment, and outcome information and trend data for administrative planning and marketing, development of support programs, quality improvement and research activities. Data are submitted to the North Carolina Central Cancer Registry in compliance with state reporting requirements to support statewide improvements in cancer detection and treatment.

Our primary customers are:

• Administrators/Directors (Planning & Development of New Programs)
• Development Office (Survivor Events, Education Events)
• Researchers (Case Finding for New Studies; Follow Up for ongoing studies)
• North Carolina Central Cancer Registry (State-mandated reporting)
• Outside Registries (Request Diagnostic, Treatment, Follow Up Information)

Cancer Committee

To meet the requirements for hospital Cancer Program Approval (accreditation) by the American College of Surgeons’ (ACoS) Commission on Cancer, the Oncology Clinical Service Unit Program Committee serves as the designated Cancer Committee.

Name	Title
Carolyn Carpenter, MHA	Associate Chief Operating Officer Oncology Services
Thomas A. D’Amico, MD Chairman	Medical Director, Oncology Clinical Service Unit; Associate Professor—Thoracic Surgery
Physician Members
Amy Abernethy, MD	Co-chair, Duke Quality Cancer Care Initiative; Assistant Professor—Medicine (Oncology)
Andrew Berchuck, MD	Interim Chief Gynecologic Oncology; Professor—OB/GYN Oncology
Bryan Clary, MD	ACoS Cancer Liaison Physician; Assistant Professor—Surgery-General
Jeffrey Crawford, MD	Chief Division of Medical Oncology; Associate Director Clinical Research— DCCC; Professor Medicine—Oncology
Carlos DeCastro, MD	Medical Director, Inpatient Medical Oncology; Associate Clinical Professor—Medicine (Oncology)
Louis Diehl, MD	Medical Director, Oncology Treatment Center and Oncology Outpatient Clinics; Clinical Professor—Medicine (Oncology)
H. Kim Lyerly, MD	Director, Duke Comprehensive Cancer Center; Co-chair, Duke Quality Cancer Care Initiative; George Barth Geller Professor of Research in Cancer
John Madden, MD, PhD	Associate Professor—Department of Pathology
Joseph Moore, MD	Professor—Medicine (Oncology & Transplant Services)
Erik Paulson, MD	Professor—Radiology (Abdominal Imaging)
Administrative Members
Allison Andre, RN	Director, Cancer Network Development (Duke Oncology Network)
Eileen Battershall	Revenue Manager, Practice Specialists
Kim Denty, RN	Health Center Administrator, Oncology Services, PDC
William Downey, MSW	Assistant Director, Social Work
William T. Fulkerson	Administrative Director, Bone Marrow Transplant
Tracy Gosselin, RN	Director, Oncology Services
Julia Hammond, PharmD	Pharmacy Coordinator—Oncology
Kerry Harwood, RN	Director, Duke Cancer Patient Education Program
Randy Heffelfinger	Business Manager, Medicine—Oncology
Laura Houchin, RN	Oncology Nurse Specialist
Paul Lindia	Associate Vice President, New Business Development (Oncology)
Eileen Morgan, CTR	Manager, Duke Tumor Registry
Celia Walsh	Senior Strategic Services Associate—Oncology
Renee Webb, RN	Clinical Operations Director, Units 9100 and 9300

Primary Site Distribution for All Cases 1^st Seen at Duke in 2004

A total of 4922 cases (including non-malignant CNS tumors) diagnosed and/or treated at Duke Hospital or in the Duke Physician Diagnostic Clinics (PDC) were added to the registry database for the year 2004. Over 80% are analytic cases (newly diagnosed) and 54% of the analytic cases were diagnosed elsewhere and referred to Duke for all or part of their initial treatment. Non-analytic patients (about 20% of all cases) come to Duke for treatment after initial treatment failure or with recurrent disease.

The most common cases seen in 2004 were: Digestive, Brain & CNS, Respiratory, Breast, Male and Female Genital cancers.

 

All 2004 Cases by Primary Site

 

Table I -- Duke University Hospital -- Cases 1st Seen in 2004
	Class of Case			Percent
Primary Site	Analytic	Non-Analytic	Total	of Total
LIP	1	0	1	0.0
TONGUE	18	5	23	0.5
SALIVARY GLANDS	11	3	14	0.3
FLOOR OF MOUTH	4	2	6	0.1
GUM & OTHER MOUTH	9	2	11	0.2
NASOPHARYNX	6	2	8	0.2
TONSIL	16	2	18	0.4
OROPHARYNX	3	0	3	0.1
HYPOPHARYNX	5	1	6	0.1
OTHER ORAL CAVITY & PHARYNX	0	0	0	0.0
TOTAL Head & Neck	73	17	90	1.8
ESOPHAGUS	80	7	87	1.8
STOMACH	46	17	63	1.3
SMALL INTESTINE	17	4	21	0.4
CECUM	28	2	30	0.6
APPENDIX	3	1	4	0.1
ASCENDING COLON	28	11	39	0.8
HEPATIC FLEXURE	7	0	7	0.1
TRANSVERSE COLON	8	1	9	0.2
SPLENIC FLEXURE	4	0	4	0.1
DESCENDING COLON	7	1	8	0.2
SIGMOID COLON	31	15	46	0.9
LARGE INTESTINE, NOS	9	15	24	0.5
Total COLON, EXCL RECTUM	125	46	171	3.5
RECTOSIGMOID JUNCTION	6	3	9	0.2
RECTUM	83	15	98	2.0
Total RECTUM & RECTOSIGMOID	89	18	107	2.2
ANUS,ANAL CANAL,ANORECTUM	11	2	13	0.3
LIVER	54	2	56	1.1
INTRAHEPATIC BILE DUCT	7	0	7	0.1
Total LIVER & INTRAHEPATIC BILE DUCT	61	2	63	1.3
GALLBLADDER	7	2	9	0.2
OTHER BILIARY	28	1	29	0.6
PANCREAS	178	4	182	3.7
RETROPERITONEUM	7	3	10	0.2
PERITONEUM,OMENTUM,MESENTERY	11	3	14	0.3
OTHER DIGESTIVE ORGANS	6	1	7	0.1
TOTAL Digestive System	666	110	776	15.8

Table I -- Duke University Hospital -- Cases 1st Seen in 2004 (cont.)
Primary Site	Analytic	Non-Analytic	Total	% of Total
NOSE,NASAL CAV & MIDDLE EAR	8	2	10	0.2
LARYNX	28	2	30	0.6
LUNG & BRONCHUS	490	48	538	10.9
PLEURA	0	0	0	0.0
TRACHEA, MEDIASTINUM & HEART	4	1	5	0.1
TOTAL Respiratory System	530	53	583	11.8
TOTAL Bones & Joints	28	4	32	0.7
TOTAL Soft Tissue	46	10	56	1.1
MELANOMAS -- SKIN	219	40	259	5.3
OTHER NON-EPITHELIAL SKIN	8	5	13	0.3
TOTAL Skin	227	45	272	5.5
TOTAL Breast	427	95	522	10.6
CERVIX UTERI	61	8	69	1.4
CORPUS UTERI	157	11	168	3.4
UTERUS, NOS	1	0	1	0.0
OVARY	97	9	106	2.2
VAGINA	7	0	7	0.1
VULVA	34	0	34	0.7
OTHER FEMALE GENITAL ORGANS	6	1	7	0.1
TOTAL Female Genital System	363	29	392	8.0
PROSTATE	333	63	396	8.0
TESTIS	10	3	13	0.3
PENIS	2	1	3	0.1
OTHER MALE GENITAL ORGANS	0	0	0	0.0
TOTAL Male Genital System	345	67	412	8.4
URINARY BLADDER	63	29	92	1.9
KIDNEY & RENAL PELVIS	137	45	182	3.7
URETER	4	3	7	0.1
OTHER URINARY ORGANS	4	1	5	0.1
TOTAL Urinary System	208	78	286	5.8
TOTAL Eye & Orbit	24	4	28	0.6
BRAIN	349	156	505	10.3
CRANIAL NERVES & OTHER NERVES	119	18	137	2.8
TOTAL Brain & Other Nervous System	468	174	642	13.0
THYROID	41	16	57	1.2
OTHER ENDOCRINE INCL THYMUS	42	18	60	1.2
TOTAL Endocrine System	83	34	117	2.4

Table I -- Duke University Hospital -- Cases 1st Seen in 2004 (cont.)
Primary Site	Analytic	Non-Analytic	Total	% of Total
HODGKIN-NODAL DISEASE	16	16	32	0.7
HODGKIN-EXTRANODAL DISEASE	2	0	2	0.0
Total HODGKIN'S DISEASE	18	16	34	0.7
NODAL NHL	107	56	163	3.3
EXTRANODAL NHL	81	17	98	2.0
Total NHL	188	73	261	5.3
TOTAL Lymphomas	206	89	295	6.0
TOTAL Myeloma	63	13	76	1.5
ACUTE LYMPHOCYTIC	21	25	46	0.9
CHRONIC LYMPHOCYTIC	22	9	31	0.6
OTHER LYMPHOCYTIC	2	2	4	0.1
Total LYMPHOCYTIC Leukemia	45	36	81	1.6
ACUTE MYELOID	62	18	80	1.6
ACUTE MONOCYTIC	8	2	10	0.2
CHRONIC MYELOID	14	11	25	0.5
OTHER MYELOID/MONOCYTIC	2	0	2	0.0
Total MYELOID & MONOCYTIC Leukemia	86	31	117	2.4
OTHER ACUTE LEUKEMIA	5	1	6	0.1
ALEUKEMIC, SUBLEUKEMIC	1	1	2	0.0
Total OTHER Leukemia	6	2	8	0.2
TOTAL Leukemias	137	69	206	4.2
TOTAL Mesothelioma	19	2	21	0.4
TOTAL Kaposi Sarcoma	1	1	2	0.0
TOTAL Ill-Defined & Unknown Primary	98	16	114	2.3
GRAND TOTAL	4012	910	4922	100.0

2004 Analytic Case Profile

Analytic cases (n=4012) are patients either initially diagnosed at Duke or newly diagnosed elsewhere who are referred to Duke for all or part of their initial treatment. Fifty-four (54%) percent of the analytic cases were referrals to Duke for treatment. Of the 4012 analytic cases, 49% are male (1955) and 51% are female (2057).

The most common types of analytic cases are Digestive, Respiratory, Brain & CNS, Breast and Female and Male Genital cancers.

Note: patients who come to Duke for a 2^nd opinion only are not entered into the registry database.

2004 Non-Analytic Case Profile

Non-analytic cases (n=910) were diagnosed elsewhere and received all of their initial treatment prior to coming to Duke.

Treatment at Duke is either for initial treatment failure (progression of disease) or recurrent disease. Non-analytic cases also include cases diagnosed at autopsy. Of the 910 non-analytic cases, 55% are male (500) and 45% are female (410) .

The most common non-analytic cases are Brain & CNS tumors (n=174), a reflection of the wide referral network developed by the Brain Tumor Center at Duke. The next most common non-analytic cases are Digestive, Breast and Lymphomas.

 

 

Geographic Referral Patterns

State/County Residence of All patients first seen at Duke in 2004:

Overall, 73% of the patients first seen at Duke in 2004 reside in North Carolina. The top six counties of residence were: Durham, Wake, Robeson, Orange, Granville and Alamance counties. Of the patients who reside outside North Carolina (27%), the top five states were: Virginia, South Carolina, Florida, West Virginia and Georgia.

View a map showing which counties in North Carolina patients have come from.

View a map showing which states patients have come from.

(To make the maps larger, you can zoom in by either right clicking the mouse or by using the toolbar above the map.)

State/County Residence of Analytic patients first seen at Duke in 2004:

Seventy-seven percent (77%) of the Analytic patients (newly diagnosed) reside in North Carolina. The top six counties of residence were: Durham, Wake, Robeson, Orange, Granville and Alamance counties. Of the patients who reside outside North Carolina (23%), the top five states were: Virginia, South Carolina, West Virginia, Florida, and Georgia.

State/County Residence of Non-analytic patients first seen at Duke in 2004:

North Carolina residents represent only 56% of the non-analytic patients who come to Duke for treatment of progression or recurrent disease. This is a significant difference from analytic patients, 77% of whom come from North Carolina. For non-analytic patients the top six counties of residence were: Wake, Durham, Mecklenburg, Guilford, Buncombe and Cumberland/Robeson counties. Of the patients who reside outside North Carolina, the top five states were: Virginia, South Carolina, Florida, New York/Tennessee and West Virginia.

Ongoing Follow Up of Patients

In compliance with American College of Surgeons (ACoS) guidelines for ongoing follow up, all Analytic cases in the registry database (after the current reference date of 1990) are followed each year. Current follow up is based on the date of last contact. A patient is considered “lost” to follow up if no contact has been made within 15 months after the date of last contact. Non-analytic cases and foreign residents are not followed and are not included in follow up calculations.

ACoS Follow Up Standard	Duke Follow Up Results
90% for all analytic cases diagnosed within the last 5 years	95% [number of cases = 20,150]
80% for all analytic cases in the database since our reference date of 1990.	92% [number of cases = 51,910]

 

Duke Tumor Registry Staff

Eileen J. Morgan, MPA, CTR Manager, Duke Tumor Registry 919-684-0330	Cheri Willard, CTR Data & Research Requests 919-684-0331
Shelley Alvey Cancer Registrar	Deborah Belvin Cancer Registrar
Debra Carroll, CTR Cancer Registrar	Sathya Kasala, CTR Cancer Registrar
Deborah Mangum Cancer Registrar

Glossary

Analytic case:

Cancer/tumor either initially diagnosed at Duke or newly diagnosed elsewhere and referred to Duke for all or part of their initial treatment

Non-Analytic case:

Cancer/tumor diagnosed elsewhere and received all initial treatment prior to coming to Duke.

Treatment at Duke is either for initial treatment failure (progression of disease) or recurrent disease.

Non-analytic cases also include cases diagnosed at autopsy.

References

• Cancer Statistics, 2004 (CA-A Cancer Journal for Clinicians, 2004; 54:8-29)
• Commission on Cancer, Cancer Program Standards 2004. American College of Surgeons, Chicago, IL.
• International Classification of Diseases for Oncology, 3^rd Edition, World Health Organization, 2001.
• AJCC Cancer Staging Manual, 6^th Edition, American Joint Committee on Cancer, New York, NY: Springer-Verlag, 2002.

Cancer Statistics - Links

American Cancer Society – CA-A Cancer Journal for Clinicians (on-line)

(Cancer Statistics in January/February issue each year)

http://caonline.amcancersoc.org/

Commission on Cancer of the American College of Surgeons

http://www.facs.org/cancer/index.html

International Association of Cancer Registries

http://www.iacr.com.fr/

National Cancer Data Base

http://www.facs.org/cancer/ncdb/index.html

NCI – State Cancer Profiles

http://statecancerprofiles.cancer.gov/incidencerates/incidencerates.html

NCI – SEER (Surveillance Epidemiology and End Results)

http://seer.cancer.gov/

North American Association of Central Cancer Registries (NAACCR)

http://www.naaccr.org/

North Carolina Central Cancer Registry

http://www.schs.state.nc.us/SCHS/CCR/