The Clinical Cancer Registry ClinCR Project

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• The Clinical Cancer Registry (ClinCR) Project

By Neville Board
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• Focus on Stage and Rx
• MDS simplistic actual journey not flat
• Concepts are right, however.
• Note the Disease-specific lobbying
• Chemo dose and dates a lot of work for little
  return
• Radio should be

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Cancer Institute (NSW) Act 2003
The objectives of the Cancer Institute are (a)
to increase the survival rate for cancer
patients, (b) to reduce the incidence of cancer
in the community, (c) to improve the quality of
life of cancer patients and their carers, (d) to
operate as a source of expertise on cancer
control for the government, health service
providers, medical researchers and the general
community.
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What do we know?

• Incidence mortality

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www.statistics.cancerinstitute.org.au
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www.treatment.cancerinstitute.org.au
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What do we know?

• Things that improve outcomes
• Preventive behaviour
• Early detection
• The right treatment/s
• Multidisciplinary teams and care coordinators
• Specialisation and critical mass
• Clinical trials enrolment
• Psychosocial support

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• A Pooled Analysis of Adjuvant Chemotherapy for
  Resected Colon Cancer in Elderly Patients
• (Volume 3451091-1097 October 11, 2001, Nº 15)
• 5 yr survival rate higher for surgery (71)
  chemo than for surgery alone (64, Plt0.001) for
  colon Ca. Pooled analysis of 7 RCTs, 3351
  patients.
• Conclusion "Selected elderly patients with colon
  cancer can receive the same benefit from
  fluorouracil-based adjuvant therapy as their
  younger counterparts, without a significant
  increase in toxic effects."

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CANCER REGISTRIES
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CANCER REGISTRIES
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What do we know?

• Inpatients statistics (mostly surgical)
• Dx, procedures, morphology
• AKA Admitted Patient Data collection
• Radiotherapy statistics
• Dx, beam, fractions, stage
• AKA LANTIS and VARiS data
• Streamed from source systems into data warehouse
  (HIE)

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What dont we know?

• Stage
• Chemotherapy
• Cases, Dx, regime, cycles
• Haematology treatments
• Cases, Dx, regime, cycles
• Intermediate outcomes
• Quality of care

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WHERE DO WE WANT TO BE?
Colorectal cancer survival curve adjusted by
Dukes stage
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WHERE DO WE WANT TO BE?
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• Accurate clinical information is needed to ensure
  best practice is being delivered to cancer
  patients.
• Currently, information on the stage, treatment
  and intermediate outcomes of cancer patients
  cannot be aggregated or analysed.
• Area cancer services need to monitor and
  benchmark the appropriateness and effectiveness
  of care.
• The National Cancer (Clinical) Minimum Data Set,
  collected for all courses of cancer treatment,
  was designed to support these measures.

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CLINICAL CANCER REGISTRY

• An Area-based registry to
• monitor service quality
• target deficiencies for remedial action
• evaluate outcomes of this action.
• provide detailed management information for
  cancer services planning
• Monitor Clinical programs MDT, Psychosocial,
  Clinical trials, QCT

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NOT RESOLVED

• NSW collection aggregation
• Private sector
• Disease-specific data requirements

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NSW Incidence 31,478 - 2003
NSW Mortality 12,563 - 2003
Person
CENTRAL CANCER REGISTRY
Disease
Survivals
Age sex
Death
Cancer types
Geocoding
Stage
CLINICAL CANCER REGISTRY
Outcomes by stage
Patterns of care
Treatment
Appropriateness of Rx
Quality of care
Adjuvance
Access
Activity by cancer type
NSWOG SUBSET
DISEASE-SPECIFIC INDICATORS
Genito-urinary
Haematology
FIGO - cervix
FIGO - ovary
Gynae-oncology
FIGO - vaginal
FIGO - fallopian
FIGO - uterine
FIGO - GTN