# Presentation: 825854

## United States Cancer Registries

**FDA Meeting of Pediatric Subcommittee of the Anti-Infective Drugs Advisory Committee**
**October 30, 2003**
**Phyllis A. Wingo, PhD, MS**

## Outline of Presentation

** ****Cancer registry programs in the United States**
**Data available**
**Data quality issues**
**United States Cancer Statistics (USCS), including childhood cancers**
**Follow-up**
**Summary**

##  Cancer Registry Programs in the 
United States

**United States**

## History of Cancer Registration in the United States

**1930's -First hospital based registries**
**1941 - ****	****Connecticut Cancer Registry **
**1971 - ****	****SEER Program**
**1987 - ****	****NAACCR **
**1990 - ****	****National Cancer Data Base**
**1992 - ****	****National Program of Cancer ****	****	****	****Registries **
**2000 -****	****CDC and NCI Memorandum of****	**** ****	****	****Understanding**
**2002 - ****	****United States Cancer Statistics**

## Surveillance Epidemiology and End Results (SEER) Program

**NCI **
**1973+**
**9 States and 6 metropolitan areas **
** ****26% population coverage**

-  AK   HI

**SEER**
**SEER/NPCR (2000+)**

## National Program of Cancer Registries (NPCR)

**CDC **
**1995+**
**45 states, **
**	****3 territories, District of Columbia**
**96% population coverage**

**NPCR**
**NPCR/SEER**

-  AK   HI

## Cancer Registries Amendment Act (PL 102-515)

**Passed by Congress October 1992**
**Authorized establishment of National Program of Cancer Registries (NPCR)**
**Set requirements for funded central registries**

## Requirements of Cancer Registries Amendment Act

**Statewide, population-based registry**
**Statewide legislation/regulations**
**Compliance with standards**
**Completeness**
**Timeliness**
**Quality**
**Uniform data elements, uniform format**
**Statewide annual report**

## Legislation and Regulations

_**Authorizing legislation **_** supports existence of central registries**
_**State regulations**_**:****	****	****	****	****	****	****- Comprehensive reporting ****	****	****	****- Access to records****	****	****	****	****	****- Reporting of uniform data****	****	****	****- Protection of confidentiality****	****	****	****- Access to data by researchers****	****	****	****- Authorization to conduct research**
**- Protection from liability****	****	****	****	****	****	****	**

## 
Data available in 
population-based registries in the United States

**Data available in **
**population-based registries in the United States**

## Reportable Cancer Case

**Defined as "each form of invasive cancer with the exception of basal cell and squamous cell carcinoma of the skin and each form of in situ cancer except for carcinoma in situ of the cervix uteri"**

## Data Items

_**Demographic Information**_**, including at a minimum:**
**Name**
**Address at diagnosis**
**Census tract**
**Race and Spanish/Hispanic origin**
**Sex**
**Birth date**
**Social security number**

## Data Items (Continued)

_**Clinical Information**_**, including at a minimum:**
**Date of  diagnosis**
**Date of  admission/first contact**
**Source of  information**
**Date and type of first course of definitive treatment (surgery)**
**Date of death**
**Underlying cause of death**

## Data Items (Continued)

_**Pathologic Information**_**, including at a minimum:**
**Primary site****	****	**
**Morphology Type, behavior, and****	**** grade****	**
**Sequence number**
**Laterality**
**Diagnostic confirmation**

## 
Data Quality Issues

**Data Quality Issues**

## NPCR Standards for Completeness

**Standard processes for measuring completeness:**
**Case sharing with all bordering states**
**Case reporting from all facilities providing cancer screening, diagnosis, and treatment**
**Case finding audits**
**Death clearance and follow-back**
**Duplicate records protocol**

## NPCR Standards for Timeliness  

**Standard data items for measuring timeliness:**
**Dates case report **
**sent to central registry**
**received by central registry**
**loaded into central registry database**
**Date tumor record available in central registry**

## NPCR Standards for Completeness and Timeliness

**Within 24 months, **
**<3% death certificate only cases **
** ****≤****0.1% of records are duplicates**
**90% of unduplicated, expected, malignant cases within 12 months**
**95% of unduplicated, expected, malignant cases within 24 months**

## NPCR Standard for Quality

**Within 12 months of the close of the dx year, 97% of the cases pass an NPCR prescribed set of standard data edits.**
**Within 24 months of the close of the dx year, 99% of the cases pass an NPCR prescribed set of standard data edits.**

## North American Association of Central Cancer Registries (NAACCR)

**Uniform data standards for cancer registration**
**Education and training **
**Certification **
**Data publication **
**Data use**

## 	NAACCR*-Certified State Cancer Registries by Year of Data Submission

**1997**

**1998**

***North American Association of Central Cancer Registries**

**2000**

**2002**

**	****NAACCR*-Certified State Cancer Registries by Year of Data Submission**

## 
United States Cancer Statistics, 2000 Incidence 

**United States Cancer Statistics, 2000 Incidence **

## Joint Publication of National, Regional, and State Cancer Incidence Data

**United States Cancer Statistics (USCS) **
**2000 incidence data**
**Crude and age-adjusted rates  per 100,000**
**95% CI**
**84% population coverage**

## USCS – Eligibility Criteria 

**High quality data**
_**>**_** 90% completeness of case ascertainment**
_**<**_** 5% death certificate-only cases**
_**>**_** 97% records pass EDITS**
_**<**_** 3% records missing information on race**
_**<**_** 2% records missing information on sex and age **
**41 statewide and 6 metropolitan area cancer registries met criteria**

## Registry Programs Meeting Quality Criteria 2000

**Registry Programs Meeting Quality Criteria 2000**

**PUERTO**
**RICO **

**AK**

**HAWAII**

**CA**

**ID**

**WA**

**MT**

**WY**

**UT**

**CO**

**AZ**

**NM**

**TX**

**OK**

**KS**

**NE**

**SD**

**ND**

**MN**

**WI**

**IA**

**IL**

**OH**

**IN**

**KY**

**WV**

**VA**

**NC**

**GA**

**FL**

**AL**

**MS**

**MO**

**AR**

**LA**

**NV**

**MI**

**PN**

**NJ**

**NY**

**MA**

**VT**

**NH**

**ME**

**TN**

**SC**

**MD**

**DE **

**CT **

**RI**

**DC**

**OR**

**Atlanta**

**Detroit**

**San**
**Francisco/Oakland**

**Los**
**Angeles**

**Seattle/Puget Sound**

**San Jose/**
**Monterey**

**REPUBLIC**
**of Palau **

**7**

## USCS - Content

**Section 1:**** ****National cancer incidence data by site,****	****sex and race**** **
**84% coverage US population**
** ****84% White **
** ****81% Black **
** ****91% Asian / Pacific Islander**
** ****> 1 million new cases**
** ****> 10,000 new cases among children 0-19 years old**
**Section 2****	**
**Section 3 ****	**

## Invasive Cancer Incidence Rates for the 15 Primary Sites with the Highest Age-Adjusted Incidence Rates, United States, 2000

** **

- Liver & IBD

- Brain & ONS

- Larynx

- Esophagus

- Stomach

- Pancreas

- Leukemias

- Oral Cavity & Pharynx

- Kidney & Renal Pelvis

- Melanomas of the Skin

- Non-Hodgkin Lymphoma

- Urinary Bladder

- Colon & Rectum

- Lung & Bronchus

- Prostate

**0**

**50**

**100**

**150**

**200**

**250**

**300**

**7.4  **

**7.7  **

**7.8  **

**8.5  **

**10.5 **

**12.1 **

**14.5 **

**15.7 **

**16.4 **

**19.4 **

**21.6 **

**37.8 **

**65.0 **

**87.9 **

**160.4**

**Males, All Races**

**Rate per 100,000**

## Invasive Cancer Incidence Rates for the 15 Primary Sites with the Highest Age-Adjusted Incidence Rates, United States, 2000

- Brain & ONS

- Oral Cavity & Pharynx

- Kidney & Renal Pelvis

- Leukemias

- Cervix Uteri

- Pancreas

- Urinary Bladder

- Thyroid

- Melanomas of the Skin

- Non-Hodgkin Lymphoma

- Ovary

- Corpus & Uterus, NOS

- Colon & Rectum

- Lung & Bronchus

- Breast

**0**

**50**

**100**

**150**

**200**

**250**

**300**

**5.5  **

**6.0  **

**8.4  **

**8.7  **

**9.2  **

**9.5  **

**9.8  **

**10.7 **

**12.4 **

**15.4 **

**15.8 **

**23.5 **

**47.0**

**52.5 **

**128.9**

**Females, All Races**

**Rate per 100,000**

## Lymphoma Incidence Rates by Sex, United States, 2000

|  |  |  |  |  |
| --- | --- | --- | --- | --- |
|  | Males |  | Females |  |
|  | Rate | Count | Rate | Count |
|  |  |  |  |  |
| Lymphoma | 22 | 23,092 | 14 | 26,052 |
|     Hodgkin | 19 |  | 12 |  |
|     Non-Hodgkin |  3 |  |  1 |  |
|  |  |  |  |  |
|  |  |  |  |  |
|  |  |  |  |  |

**Age-adjusted rates (2000) per 100,000 **
**	**

## Invasive Skin Cancer Incidence Rates by Sex, United States, 2000

|  |  |  |  |  |
| --- | --- | --- | --- | --- |
|  | Males |  | Females |  |
|  | Rate | Count | Rate | Count |
|  |  |  |  |  |
| Skin* | 25 | 26,052 | 18 | 23,162 |
|    Melanoma of skin  |   3 |  |    2 |  |
|    Non-epi skin | 22 |  | 15 |  |
|  |  |  |  |  |
|  |  |  |  |  |
|  |  |  |  |  |

**Age-adjusted rates (2000) per 100,000**
***Excluding basal and squamous cell skin cancer **
**	**

## Invasive Cancer Incidence Rates for  Childhood Cancers, by Sex, Ages 0-19, 2000

|  | Males |  | Females |  |
| --- | --- | --- | --- | --- |
| ICCC category | Rate | Count | Rate | Count |
| All sites combined | 166 | 5,674 | 147 | 4,782 |
| I      Leukemia |   42 |  |   36 |  |
| II     Lymphoma |   28 |  |   20 |  |
| III    CNS |   30 |  |   25 |  |
| IV   Sympath nerv sys |     8 |  |     7 |  |
| V    Retinoblastoma |     3 |  |     2 |  |
| VI   Renal tumors |     6 |  |     7 |  |
|  |  |  |  |  |

**Age-adjusted rates (2000) per 1,000,000 **
**	**

## Invasive Cancer Incidence Rates for  Childhood Cancers, by Sex, Ages 0-19, 2000

|  | Males |  | Females |  |
| --- | --- | --- | --- | --- |
| ICCC category |  |  |  |  |
| VII  Hepatic tumors |     2  |  |     2  |  |
| VIII Malignant bone |     9 |  |     8 |  |
| IX   Soft-tissue sarcoma |   13  |  |   10  |  |
| X    Germ-cell tropho |   13 |  |   10 |  |
| XI   Carcinomas |   11 |  |   19 |  |
| XII  Other |    1 |  |    1 |  |
| Not classified |    ^ |  |    1 |  |
|  |  |  |  |  |
|  |  |  |  |  |

**Age-adjusted rates (2000) per 1,000,000 **

**Invasive Cancer Incidence Rates for **** Childhood Cancers, by Sex, Ages 0-19, 2000**

## USCS - Content

**Section 1: National cancer incidence data by site, sex and race**
**Section 2:**** ****Cancer incidence data by states,   census division, sex and race**
**Regions **_**>**_** 80% population coverage**
**Pacific 100%, **
**Mt. 100% **
**W.N. Central 96% **
**E.N. Central 100% **
**Mid. Atlantic 100%**
**New England 91%**
**South 57%**** **
**Section 3 ****	**

## Slide 34

## USCS - Content

**Section 1: National cancer incidence data by site, sex and race**
**Section 2: Cancer incidence data by states, census division, sex and race for the leading 20 sites males, 29 sites females**
**Section 3:**** ****State-specific cancer incidence rates ranked within sex and race for the leading 15 sites **

## 
Follow-up in Population-Based Registries in the United States

**Follow-up in Population-Based Registries in the United States**

## Follow-up to Determine Vital Status

**  ****To confirm deaths among cancer patients, all NPCR and SEER registries link with: **
**State death certificates files**
**Social security files**
**National Death Index (NDI)**

## Follow-up to Determine Vital Status

**  ****To confirm alive status among cancer patients, all SEER (9 states) and selected NPCR registries (very few) link with: **
**Social security files**
**Hospital discharge data**
**Medicare (CMS)**
**Voter registration**
**Motor vehicle registration**
**Other**

## Summary

**Population-based cancer registries in all 50 states and the District of Columbia. **
**CTQ varies across states**
**Follow-up good for death status, limited for alive status**

## Summary

**Strong nationwide cancer registry infrastructure in place **
**Data available at national, regional, state and local levels for:**
**Monitoring burden of disease **
**Planning comprehensive cancer control programs****	**
**Conducting special research studies**

**www.cdc.gov/cancer/npcr**

## Future Plans 

-   **Expand population-based coverage**
**  ****Include other racial and ethnic groups**
**  ****Estimated of case counts at the national and        regional levels**
**  ****Trend data**
**  ****Pediatric cancers**
**  ****Mortality data**

## Frequency DistributionAges 0-19, 2000

| 
ICCC category | NPCR
N=9,882 | SEER
N=1,823 |
| --- | --- | --- |
| I      Leukemia | 25% | 27% |
| II     Lymphoma | 15 | 14 |
| III    CNS | 18 | 17 |
| IV   Sympathetic nervous system |  5 |  5 |
| V    Retinoblastoma |  2 |  2 |
| VI   Renal tumors |  4 |  4 |
| VII  Hepatic tumors |  1 |  1 |
| VIII Malignant bone tumors |  5 |  5 |

## Frequency Distribution, continuedAges 0-19, 2000

| 
ICCC category | NPCR
N=9,882 | SEER
N=1,823 |
| --- | --- | --- |
| IX   Soft-tissue sarcoma |    8 % |    9 % |
| X    Germ-cell trophoblastic |    7 |    7 |
| XI   Carcinomas |    9 |    9  |
| XII  Other |    0 |    0 |
| Not classified |    0 |    0 |
| Total | 100 | 100 |

## Lymphoma and Reticuloendothelial Neopl, 2000  Age-Specific and Age-Adjusted Incidence Rates

**Rates are per 1,000,000 and are age-adjusted to the **
**2000 US standard population**

## Acute Lymphocytic Leukemia, 2000Age-Specific and Age-Adjusted Incidence Rates

- 0-04

**Rates are per 1,000,000 and are age-adjusted to the **
**2000 US standard population**