1. 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

2. Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008 National cancer Registry ROC-Regional Oncology Centers Legally required Reports from - pathology dpt - clinics Swedish Childhood Cancer Registry Voluntary Reports from - Treating centres Crosscheck

3. 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

4. Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008 Distribution of childhood malignancies in Sweden Swedish Childhood Cancer Registry – 250-300/year 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%

5. 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

6. Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008 7-NET VPN-SYSTEM INTERNET The databases in Stockholm SWEDISH CHILDHOOD CANCER REGISTRY PROTOCOLS EVALUATION PUBLICATIONS WORKGROUPS LEUKEMIAS SOLID TUMOURS CNS TUMOURS 7 000 children BLF NORDIC DATABASEEUROPEAN DATABASE PROTOCOLS EVALUATION PUBLICATIONS NOPHO- WORKGROUPS PROTOCOLS EVALUATION PUBLICATIONS SIOP-WORKGROUP RANDOMISED STUDY LEUKEMIAS LYMPHOMAS (NHL) 6 000 children NOPHO CNS-TUMORS (HIT/SIOP-PNET 4 SR) 340 children SIOP

7. Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008 7-NET VPN-SYSTEM INTERNET PROTOCOLS EVALUATION PUBLICATIONS WORKING GROUPS SWEDISH CHILDHOOD CANCER REGISTRY Data from centres CYTOGENETIC DATABASE PHENOTYPE DATABASE ANNUAL REPORTS Pharmacology In vitro resistance MRD studies Cytogenetic studies Immunological studies BMT studies Epidemiologic studies Research from the database

8. Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008 7-NET VPN-SYSTEM INTERNET WORKGROUPS KSGöteborg Lund UmeåLinköpingUppsala Leukemias Solid Tumors CNS-Tumors Radio Therapy Late Effects BIO BANK 1 0 00 1 1 1 1 PROTOCOLS EVALUATIONS RESEARCH PUBLICATIONS SWEDISH CHILDHOOD CANCER REGISTRY 7 000 CHILDREN

9. BIOBANK CENTRAL / 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

11. Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008 Swedish data

12. Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008 Nordic data

13. Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008 European data

14. Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008 Data in return

15. Swedish Childhood Cancer RegistryNB-CNS meeting 18/9 2008 NOPHO For local research