Download Fremskrivning av kreftinsidens

The Cancer Registry of Norway
Jan F Nygård
Head of the IT-department
Background
> Population-based cancer registry with national
coverage
> 150 employees
> Compulsory reporting of cancer cases since
1951 from the clinical community
> Personal identification number
> Correct coding of multiple primary tumours
> Follow up of patients for survival analysis
> Correct assessment of the denominators for cancer rates
through the population database
> Linkage with other sources for comparisons between groups
Legislation
> The Cancer Registry may without consent contain data relating to
persons who have or have had cancer, precancerous conditions,
or benign tumours in the central nervous system:
>
>
>
>
>
>
>
>
name and personal identity number
address and municipality of residence
the site of origin of the cancer
morphological diagnosis
spread at the time of diagnosis
metastases
relapses
basis for diagnosis (imaging diagnostics, histopathological
examination, cytological material, other type of examination)
> cancer treatment received by the data subject (patient),
indications and contra-indications for treatment, method of
treatment, as well as any complications or side-effects
> date and cause of death
Organisation
Research at the Cancer Registry
Birth
Markers
Prevention
Janus
biobank
Death
Cancer diagnose
Symptoms
Screening
Screeningprograms
for breastand cervical
cancer
Disease progression
Diagnostic
Treatment
investigations
Incidence
registry
Curative
Palliative
Clinical registries for
selected cancers
> Number of scientific papers published in 2009: 88
Long term effects
Long term surveillance
Cancer registration in Norway
Pathology reports
Death certificates
Clinical notifications
Hospital patient
administrative systems
The Main database (since 1953)
> Number Patients:
1 222 602
> Number of diagnoses: 1 496 421
> Number of notifications: 3 612 896
> Number of new cases 2009: 27 520
> Data quality (2001-05)
> 98.8 % complete for all types of cancers combined
> 93,9 % morphologically verified
> 0,9 % obtained from death certificate only (DCO).
> Basis for the yearly publication “Cancer in Norway”
Trends, all cancer types combined
Clinical quality registries
> The main database contains data related to the initial
diagnosis
> Several additional clinical databases connected to the main
database are either already established or will soon be,
with a focus on treatment and longitudinal data
>
>
>
>
>
>
>
>
Nordic Solid Tumors in children (NOPHO) database
Colorectal cancer database
Prostate cancer database
Lung cancer database
Ovarian cancer database
Breast cancer database
Malignant melanoma database
Lymphoma database
The integrated model for national
clinical registries
> Clinical registries have been established as an integrated
part of the Cancer Registry of Norway for
>
>
>
>
Colorectal cancer
Prostate cancer
Malignant melanoma
Breast cancer
Clinical and descriptive research
> Projects related to the different clinical registries
> diagnostics, treatment and outcome quality
> evaluation of cancer care
> Time trend studies
> Prediction of future cancer burden
> Annual report: Cancer in Norway 2007:
“Long-term survival of cancer patients in Norway
1953-2006”
Example: Treatment of rectum
cancer
Proportion of local recurrence
1988
2004
28 %
9%
Key success factors:
> Introduction of new operation method (TME) with nationwide
training
> Establishment of a clinical registry for rectum cancer within
the Cancer Registry of Norway (CRN)
> Close collaboration between CRN and the clinical
community
> Feedback to the hospitals on their results
> Centralizing treatment
Use of MR in medical investigation by
calendar time
100%
90%
80%
70%
60%
Ikke angitt
50%
MR ikke utført
MR utført
40%
30%
20%
10%
0%
2001
2002
2003
2004
2005
2006
Screening-related research
> Evaluation of the mammography programme:
mortality changes, biological features, health
service logistics, quality of diagnostics and
treatment
> Vaccination against HPV infection of the cervix
> Evaluation of the cervix screening programme:
logistics, compliance, tests
> Colorectal cancer screening: adenoma/cancer,
life-style, quality of life, health economy, health
services, laboratory studies
Important events in life, as seen by
a cancer epidemiologist
Traditional cancer registration
Focus of
primary diagnosis
K: Clinical report
P: Patology report
D: Death certificate
Principles of registration
>
>
>
>
1st hand information
Independence of information
Collect information as they occur
Coding and classification adhere to agreed
international guidelines
With regard to comparability, completeness,
validity and timeliness
Traditional cancer registration
(plus)
Focus on time of
primary diagnosis
K: Clinical report
P: Patology report
D: Death certificate
N: Patient register report
So what is the difference between
a traditional cancer register and a
clinical/quality register?
Cancer registration
Clinical / quality - registries
Diagnosis
Time of relapse
Start of primary
treatment End of primary
treatment
Time of metastatic disease
D: Diagnostic report
S: Surgery report
R: Radiotherapy
C: Chemotherapy report
H: Hormonal therapy report
P: Patology report
D: Death certificate
N: Patient register report
Consequences for clinical and
health services research
> Quality indicators
> Are patients diagnosed according to
national guideslines
> Are patients treated according to
national guideslines
> Regional differences?
> Comparisons of treatment regiments
Diagnosis
Start of primary
treatmentEnd of primary
treatment
Time of relapse
Time of metastatic disease