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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. National cancer Registry ROC-Regional Oncology Centers

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The Swedish Childhood Cancer Registry

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  1. 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

  2. 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

  3. 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

  4. 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

  5. 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

  6. 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

  7. 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

  8. 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

  9. 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

  10. Swedish data NB-CNS meeting 18/9 2008

  11. Nordic data NB-CNS meeting 18/9 2008

  12. European data NB-CNS meeting 18/9 2008

  13. Data in return NB-CNS meeting 18/9 2008

  14. NOPHO For local research NB-CNS meeting 18/9 2008

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