Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008 The Swedish Childhood Cancer Registry ...
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Transcript of Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008 The Swedish Childhood Cancer Registry ...
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