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The Swedish Childhood Cancer Registry. Göran Gustafsson, Mats Heyman, Åsa Vernby, Anders Larsson, Julio Soto, Marianne Törnblom, Birgitta de Verdier, Elisabeth Broby. Childhood Cancer Research Unit, Karolinska Institutet, Sweden. National cancer Registry ROC-Regional Oncology Centers

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the swedish childhood cancer registry
The Swedish Childhood Cancer Registry
  • Göran Gustafsson, Mats Heyman, Åsa Vernby, Anders Larsson, Julio Soto, Marianne Törnblom, Birgitta de Verdier, Elisabeth Broby.
  • Childhood Cancer Research Unit, Karolinska Institutet, Sweden

NB-CNS meeting 18/9 2008

slide2

National cancer Registry

ROC-Regional Oncology Centers

Legally required

Reports from

- pathology dpt

- clinics

Swedish Childhood Cancer Registry

Voluntary

Reports from

- Treating centres

Crosscheck

NB-CNS meeting 18/9 2008

slide3

The Swedish Childhood Cancer Registry

  • The Database
  • - includes all forms of childhood cancer
  • - population based since the 1980s
  • - on-line since 2002

NB-CNS meeting 18/9 2008

slide4

Distribution of childhood malignancies in Sweden

Swedish Childhood Cancer Registry – 250-300/year

Other diagnoses 0.4%

Other carcinomas 1.3%

Germ cell tumours 3.3%

Soft-tissue sarcomas 4.7%

Leukemias 31.4%

Bone tumours 3.5%

Liver tumours 1.3%

Renal tumours 5.9%

Retinoblastoma 2.4%

Lymphomas/Histiocytosis

12.0%

Symphatic neuro 5.6%

CNS 28.1%

NB-CNS – 1/3 of the patients

NB-CNS meeting 18/9 2008

slide5

What is registered in the database?

  • Personal identification data
  • Clinical data at diagnosis
  • Cytogenetic, immunologic analyses
  • Treatment - Protocols, side effects, SAE
  • Follow-up – Analyses (Annual)
  • Late effects (SALUB)
  • Radio Therapy data - Dose-planning (RT-working group)
  • Biobank data?- Future

NB-CNS meeting 18/9 2008

slide6

The databases in Stockholm

NORDIC DATABASE

SWEDISH CHILDHOOD

CANCER REGISTRY

EUROPEAN DATABASE

VPN-SYSTEM

INTERNET

7-NET

LEUKEMIAS

LYMPHOMAS (NHL)

6 000 children

NOPHO

LEUKEMIAS

SOLID TUMOURS

CNS TUMOURS

7 000 children

BLF

CNS-TUMORS

(HIT/SIOP-PNET 4 SR)

340 children

SIOP

NOPHO-

WORKGROUPS

SIOP-WORKGROUP

RANDOMISED

STUDY

WORKGROUPS

PROTOCOLS

EVALUATION

PUBLICATIONS

PROTOCOLS

EVALUATION

PUBLICATIONS

PROTOCOLS

EVALUATION

PUBLICATIONS

NB-CNS meeting 18/9 2008

slide7

Research from the database

VPN-SYSTEM

INTERNET

Data from centres

7-NET

CYTOGENETIC

DATABASE

PHENOTYPE

DATABASE

SWEDISH

CHILDHOOD

CANCER

REGISTRY

ANNUAL REPORTS

Cytogenetic studies

Immunological

studies

MRD studies

WORKING

GROUPS

Pharmacology

BMT studies

In vitro resistance

Epidemiologic studies

PROTOCOLS

EVALUATION

PUBLICATIONS

NB-CNS meeting 18/9 2008

slide8

KS

Göteborg

Umeå

Linköping

Uppsala

Lund

VPN-SYSTEM

INTERNET

7-NET

SWEDISH CHILDHOOD

CANCER REGISTRY

7 000 CHILDREN

Leukemias

BIO BANK

Solid Tumors

0

0

CNS-Tumors

1

0

1

1

1

Radio Therapy

1

WORKGROUPS

Late Effects

PROTOCOLS

EVALUATIONS

RESEARCH

PUBLICATIONS

NB-CNS meeting 18/9 2008

Swedish Childhood Cancer Registry

biobank central local
BIOBANKCENTRAL / LOCAL
  • Basic information
    • Where is it stored -
    • How is it stored – Formalin, Frozen
    • Tumor material – Type of material, quality, size and representative
  • PAD
    • Copy of PAD-reports
  • The National Biobank Registry ( NAT-RBR)
    • Cooperation
swedish data
Swedish data

NB-CNS meeting 18/9 2008

nordic data
Nordic data

NB-CNS meeting 18/9 2008

slide13

European data

NB-CNS meeting 18/9 2008

data in return
Data in return

NB-CNS meeting 18/9 2008

slide15

NOPHO

For local research

NB-CNS meeting 18/9 2008