The National Program of Cancer Registries: Enhancing Cancer

Incidence Data …

Hannah K. Weir, PhD

Division of Cancer Prevention and Control

Centers for Disease Control and Prevention

…with Vital Records Data for Cancer Control

Cancer Control: an approach to reducing cancer incidence, morbidity and mortality through prevention, early detection, treatment, rehabilitation and palliation.

CDC’s Cancer Prevention and Control Programs

omprehensiveomprehensiveCCancerancerCC

ontrolontrolCC

Model for Cancer Control

Measure &Evaluate

Cancer Burden

Plan Interventions

• Prevention

• Screening

• Treatment & rehabilitation

• Palliative Care

ActImplement Interventions

The Cancer Continuum

Prevention Early

Detection

Diagnosis / Stage

Treatment &

Rehabilitation

Palliative Care

Death

Survival

If Cancer Control Planners are the “hands” of CC Plan and implement the interventions)

Vital Records and Cancer Registries are the “eyes” of CC Measure and evaluate cancer burden

Cancer Control in Action

Surveillance, Epidemiology, and End Results Program (SEER)

1971 National Cancer Act 1973+, 5 States, 4 Metro

Areas, 10% population coverage

1991 added 2 more Metro Areas, 14% population coverage

2001, added 4 more states,

26% population coverage

AK HI

SEER

SEER/NPCR (2000+)

National Program of Cancer Registries (NPCR) 1992 Cancer

Registries Amendment Act 1995 – 1998

45 states, 3 territories, District of Columbia

96% population coverage

SEER

NPCR

NPCR/SEER

AK HI

What do the ‘eyes” see in the cancer continuum ?

Vital Records - Cancer Deaths

Death

Cancer Registries - New Occurrences of Cancer

Diagnosis

Prevention

United States Cancer Statistics Combined NPCR and SEER

incidence dataIncrease in population coverage

1999 .. 78% 2002 .. 93%

2000 .. 84% 2003 .. 96%

2001 .. 92% 2004 .. 98% 100% cancer death data State, regional, and national

incidence and mortality data for whites, blacks, Asians/Pacific Islanders (A/PI), American Indian/Alaska Native (AI/AN), Hispanics, and children

www.cdc.gov/cancer/npcr/

NORTHEAST

Division

State

State contributing mortality data

State contributing incidence and mortality data

WEST

Seattle-Puget Sound

San Francisco-Oakland

San José-Monterey

Los Angeles AZ

AK

WY

OR

HI

ID

MT

UT

NV

CO

WA

NM

CA

PACIFIC

MOUNTAIN PA

ME

NY

MIDDLE ATLANTIC

NEW ENGLAND

SOUTH

Atlanta

TXGA

TN

AL

KY

AROK

MS

FL

LA

VA

NC

SC

EAST SOUTH CENTRAL

SOUTH ATLANTICWEST

SOUTH CENTRAL

WV

Detroit

OH

ND

KS

IANE

MO

MN

WIMI

IN

WEST NORTH CENTRAL

EAST NORTH CENTRAL

SD

IL

United States Cancer Statistics: 2004 Census Region and Division

MIDWEST

Female Breast Cancer (Invasive)SEER Incidence and U.S. Death Rates

0

20

40

60

80

100

120

140

160

'75 '76 '77 '78 '79 '80 '81 '82 '83 '84 '85 '86 '87 '88 '89 '90 '91 '92 '93 '94 '95 '96 '97 '98 '99 '00 '01 '02 '03 '04

Year

Rate

Per 1

00,00

0

Incidence

Death

*Rates are per 100,000 and are age-adjusted to the 2000 U.S. standard population.Source: SEER Cancer Statistics Review, 1975-2004

The Cancer Continuum

Early

Detection

Diagnosis / Stage

Female Breast Cancer Cases Diagnosed at Early Stage

Percentageof Cases

1985–1987

< 39.1

39.1–48.1

48.2–55.9

56 & over

1995–1997

Female Breast Cancer Cases Diagnosed at Early Stage

< 39.1

39.1–48.1

48.2–55.9

56 & over

Percentageof Cases

Institute of Medicine Reports “ We all want to believe that when

people get cancer, they will receive medical care of the highest quality. Even as new scientific breakthroughs are announced, though, many cancer patients may be getting the wrong care, too little care, or too much care, in the form of unnecessary procedures.” (IOM 1999)

“NPCR …has great potential to facilitate national, population-based assessments of the quality of cancer care …”

(IOM 2000)

The Cancer Continuum

Diagnosis

Treatment &

Rehabilitation

Palliative Care

Death

Survival

Linkage between the Registries and State Vital Statistics Offices

IncidentCases

All Deaths

Cancer Registry Vital Statistics

Deaths

… to update vital status

IncidentCases

Blanket NPCR-NDI Application

2006 – application approved to obtain vital status information on cancer patients who move our of state between the time of their diagnosis and their death

Clinical Research vs. Public Health

Clinical trials highest achievable survival

Public health average survival achieved

1 2 3 4 50

10

20

30

40

50

60

70

80

90

100

0

1996-99

1991-951986-90

2000-01

Rel

ativ

e su

rviv

al (

%)

Years since diagnosis

Relative Relative Survival and Population “Cure” and Population “Cure”

“cured” patients

Mean survival of fatal cases

Cure for more Colorectal Cancers, UK

Source: M. Coleman

The “Eyes” and “Hands” of Cancer Control

Prevention Early

Detection

Diagnosis

Treatment &

Rehabilitation

Palliative Care

Death

Survival

Model for Cancer Control

Measure &Evaluate

Cancer Burden

Incidence

Stage at diagnosis

Deaths

Survival

Plan Interventions

• Prevention

• Screening

• Treatment & rehabilitation

• Palliative Care

ActImplement Interventions

Important Collaborations between Cancer Registries and Vital Records

Hannah Weir

HBW4@CDC.GOV

(770) 488-3006