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Minnesota Cancer Surveillance System (MCSS) Presentation to Genetics Work Group October 23, 2007 Sally Bushhouse, DVM, MPH, PhD, MCSS Director Topics History and description of MCSS Contribution to public health Requirements for research that involves patient contact

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Minnesota cancer surveillance system mcss l.jpg

Minnesota Cancer Surveillance System (MCSS)

Presentation to Genetics Work Group

October 23, 2007

Sally Bushhouse, DVM, MPH, PhD, MCSS Director


Topics l.jpg
Topics

  • History and description of MCSS

  • Contribution to public health

  • Requirements for research that involves patient contact

  • Comments about the question at hand


History of mcss l.jpg
History of MCSS

  • Minnesota’s population-based cancer registry

  • Collects information on newly-diagnosed (incident) cancers in Minnesota residents

  • Bill was passed unanimously in 1987 (M.S. 144.671 - 144.69)

  • Data collection began in 1988

  • Data set enlarged in 1995 (federal funding)


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Data Sources

  • Pathology laboratories

  • Hospital-based cancer registries

  • Death Certificates

  • MCSS staff’s quality control activities

    • Review pathology logs

    • Review medical records when needed

    • Request info from physician offices


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Data Collected

  • Record linkage items (name, date of birth, etc)

  • Demographics (age, sex, address, race, & ethnicity)

  • Treatment facility, pathology lab, physician

  • Cancer diagnosis information

  • Extent (stage) of disease at diagnosis

  • First course of treatment


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MCSS Data processing

  • Add reports to database (electronically or manually)

  • Check data for valid codes and internal consistency

  • Link new records with existing records

  • Consolidate information when more than one report per person (51% of persons)

  • Follow up to find missing and resolve conflicting information


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MCSS contribution to public health

  • M.S. 144.671: Purpose of MCSS is to:

    • Monitor cancer incidence

    • Assist in understanding perceived clusters

    • Target intervention resources

    • Inform health professionals and citizens about risks

    • Promote high quality research for cancer control


Cancer in minnesota is not identical to u s cancer incidence nor is it uniform within the state l.jpg
Cancer in Minnesota is not identical to U.S. cancer incidence, nor is it uniform within the state

American Indian cancer incidence is much higher in Minnesota than in national data.

Cancer trends in Minnesota do not mirror national trends.

Colorectal cancer in urban vs. rural Minnesota

Mesothelioma incidence is 2x elevated in NE Minnesota.


Overall cancer incidence by race and ethnicity in minnesota and in the seer program 1998 2002 l.jpg
Overall Cancer Incidence by Race and Ethnicity incidence, nor is it uniform within the statein Minnesota and in the SEER Program, 1998-2002

Rate per 100,000 persons


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Trends in Overall Cancer Incidence in incidence, nor is it uniform within the stateMinnesota (1988-2004) and the SEER Program (1975-2004)

Rate per 100,000 persons

Year of Diagnosis

Source: MCSS (October 2007) and SEER Cancer Statistics Review, 1974-2004. Rates are age-adjusted to the

2000 US population and are for all races combined. SEER registries cover ~10% of the US population.


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Colorectal Cancer Incidence Trends in Minnesota incidence, nor is it uniform within the state

Rate per 100,000 persons

Average Percent Change in the Age-adjusted Rate:

Urban Minnesota - 1.9% / year

Rural Minnesota - 0.7% / year

Year of Diagnosis

Source: MCSS. Includes both in situ and invasive cancers. Urban residents live in 18 counties in Metropolitan Areas in the 2000 Census.


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Mesothelioma Incidence Rates* among Males in Minnesota Regions and Six Largest Counties,1999-2003

Minnesota = 2.5

SEER** = 2.0

Significantly higher than state average

Not significantly different from state average

Significantly lower than state average

Lakeof theWoods

Kittson

Roseau

Northwest

2.4

Koochiching

Marshall

St. Louis

Beltrami

Pennington

Polk

Cook

Northeast

ClearWater

Red Lake

Lake

Itasca

5.3

Mahnomen

Norman

Hubbard

Cass

Becker

Clay

Aitkin

Wadena

Crow Wing

Carlton

Ottertail

West Central

Wilkin

County Rate

Anoka *

Dakota 4.7

Hennepin 2.4

Ramsey 3.0

St Louis 4.8

Washington *

3.1

Pine

Central

Todd

Mille Lacs

2.4

Kanabec

Grant

Douglas

Morrison

Benton

Stevens

Pope

Stearns

Traverse

Isanti

Big Stone

Sherburne

Chisago

Kandivohi

Swift

Anoka

Wash-ing-ton

Metro

Meeker

Wright

Rates are per 100,000 persons, age-adjusted to the 2000 US population. Significance was determined by comparison of 95% confidence intervals.

* Rates based on fewer than ten cases are not shown.

**White males in SEER 9 Regions, 2000-2002, SEER public use file (November 2004).

Ram- sey

Chippewa

Hennepin

2.7

Lac Qui Parle

Carver

McLeod

Renville

Scott

Yellow Medicine

Dakota

Sibley

Lincoln

Lyon

Redwood

Le Sueur

Rice

Goodhue

Southwest

Southeast

Nicollet

South Central

Wabasha

1.4

Brown

Blue Earth

Olmsted

1.8

Pipestone

Murray

Cottonwood

Watonwan

Waseca

Steele

Dodge

Winona

Freeborn

Houston

Rock

Nobles

Jackson

Martin

Faribault

Mower

Fillmore


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Why does this matter? Regions and Six Largest Counties,1999-2003

  • The first step in solving a problem is a careful description of the problem.

  • Describe problem.

  • Devise an intervention.

    • Increase colorectal cancer screening in rural MN.

    • Increase American Indians’ awareness of cancer problem and how to reduce cancer risk.

    • Identify source(s) of asbestos exposure in NE Minnesota; ensure that people are no longer being exposed.

  • Monitor the results; if indicated, revise the intervention; repeat.

  • End result: Fewer people will die from cancer in Minnesota.


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Provide perspective on perceived cancer excesses Regions and Six Largest Counties,1999-2003

  • It is as important to allay fears when the data support it as it is to identify problems and elevate the focus when the data support that.

  • Examples:

    • Possible breast cancer excess around Prairie Island

    • Hundreds of calls from concerned citizens


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Requirements for research that involves patient contact Regions and Six Largest Counties,1999-2003

  • Commissioner of Health must approve research projects.

  • Researchers must demonstrate:

    • the required qualifications (education & experience)

    • sufficient scientific and social merit of proposed research

    • likelihood that research as proposed will provide answers

    • an adequate plan to protect the private information

  • A Scientific Peer Review Committee provides advice to the Commissioner of Health on these topics.

  • All research must also be approved by a federally approved Human Subjects Committee with appropriate jurisdiction.


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Points relevant to the question at hand (1) Regions and Six Largest Counties,1999-2003

  • Relatives are contacted only when the patient is deceased or otherwise incapable of responding.

  • MCSS doesn’t know who the relatives are unless the patient, physician or death certificate provides that information.

  • Physician is the one who informs MCSS that a patient is “otherwise incapable of responding.”


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Points relevant to the question at hand (2) Regions and Six Largest Counties,1999-2003

  • All patient participation in research is voluntary; per Minnesota law, at minimum, a Tennessen warning must be given.

  • Physician’s advice on the timing & appropriateness of contacting a patient is very important.

  • Physicians should know about studies because patients often turn to them them for advice about participation.


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How could the law be changed? Regions and Six Largest Counties,1999-2003

  • Leave the statute “as is.”

  • Clarify that relatives can be contacted without the patient’s consent only if the patient is deceased or otherwise incapable of responding.

  • Replace requirement for physician consent with requirement for physician consultation.


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