Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008

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

Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008

National cancer RegistryROC-Regional Oncology Centers

Legally required

Reports from - pathology dpt - clinics

Swedish Childhood Cancer Registry

Voluntary

Reports from - Treating centres

Crosscheck

Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008

• The Database

- includes all forms of childhood cancer

- population based since the 1980s

- on-line since 2002

The Swedish Childhood Cancer Registry

Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008

Distribution of childhood malignancies in SwedenSwedish Childhood Cancer Registry – 250-300/year

Germ cells tumors3,3%

Soft tissue sarcoma4,7%

Bone tumors3,5%

Liver tumours1,3%

Renal tumors5,9%

Retinoblastoma2,4%

Symphatic neuro5,6%

CNS28,1%

Lymphom/Histiocytosis12,0%

Leukemias31,4%

Other carcinomas1,3%

Other diagnosis0.4%

NB-CNS – 1/3 of the patients

Leukemias 31.4%

Lymphomas/Histiocytosis 12.0%

CNS 28.1%

Symphatic neuro 5.6%

Retinoblastoma 2.4%

Liver tumours 1.3%

Bone tumours 3.5%

Germ cell tumours 3.3%

Other carcinomas 1.3%Other diagnoses 0.4%

Soft-tissue sarcomas 4.7%

Renal tumours 5.9%

Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008

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

Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008

7-NET VPN-SYSTEM INTERNET

The databases in StockholmSWEDISH CHILDHOOD

CANCER REGISTRY

PROTOCOLSEVALUATION

PUBLICATIONS

WORKGROUPS

LEUKEMIASSOLID TUMOURSCNS TUMOURS7 000 children

BLF

NORDIC DATABASE EUROPEAN DATABASE

PROTOCOLSEVALUATION

PUBLICATIONS

NOPHO-WORKGROUPS

PROTOCOLSEVALUATION

PUBLICATIONS

SIOP-WORKGROUPRANDOMISED

STUDY

LEUKEMIASLYMPHOMAS (NHL)

6 000 children

NOPHO

CNS-TUMORS(HIT/SIOP-PNET 4 SR)

340 children

SIOP

Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008

7-NET VPN-SYSTEM INTERNET

PROTOCOLSEVALUATION

PUBLICATIONS

WORKINGGROUPS

SWEDISH CHILDHOOD

CANCER REGISTRY

Data from centresCYTOGENETIC

DATABASEPHENOTYPE DATABASE

ANNUAL REPORTS

Pharmacology

In vitro resistance

MRD studies

Cytogenetic studies

Immunological studies

BMT studies

Epidemiologic studies

Research from the database

Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008

7-NET VPN-SYSTEM INTERNET

WORKGROUPS

KS Göteborg Lund Umeå Linköping Uppsala

Leukemias

Solid Tumors

CNS-Tumors

Radio Therapy

Late Effects

BIO BANK

1 0

0 0

1 11 1

PROTOCOLSEVALUATIONS

RESEARCHPUBLICATIONS

SWEDISH CHILDHOOD CANCER REGISTRY

7 000 CHILDREN

BIOBANKCENTRAL / LOCAL

Basic informationWhere is it stored - How is it stored – Formalin, Frozen Tumor material – Type of material, quality, size and

representative

PADCopy of PAD-reports

The National Biobank Registry ( NAT-RBR)Cooperation

Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008

Swedish data

Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008

Nordic data

Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008

European data

Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008

Data in return

Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008

NOPHO

For local research