1. Dr E Singh, NCR, NHLS REVITALISING THE NATIONAL CANCER REGISTRY

2.  NCR established in 1986:  Pathology-based registry  Private and public laboratories – voluntary reporting of histology and cytology  Research and publication of pathology-based cancer incidence rates  Lack of investment in NCR – staff vacancies(skilled staff that requires long training period), no director (2002 – 2009), lack of financial resources  Private laboratories stopped reporting – 2005/06  Backlog of incidence reports NATIONAL CANCER REGISTRY

3.  NCR – unit in NHLS  Director – 2009 & Deputy Director appointed in 2010  Current staff: 12– including 5 coders, 2 data capturers  850 000 records currently, 100 000 records added annually NATIONAL CANCER REGISTRY

4. Notifications received (100 000 pa) Coded – 12 months Data captured Database closed Duplicate removal Data analysis (80 000 new cases) DATA MANAGEMENT PROCESS

5.  Addressing the backlog of pathology-based reporting  Working on the backlog – essential for removal of duplicates in later years  Produced summary tables of cancer incidence from 2000 to 2005 – available on NCR website (www.ncr.ac.za)  Currently completing 2006 data – will be available by the end of November  Completed coding 2007 – will be available by March 2014  Electronic system of reporting from private labs CURRENT STATUS

6.  Regulation No 380 of National Health Act  Health Professionals and Health Institutions obliged to report confirmed cancers – reporting form as per regulations  Regulations mandate NCR:  Collect notifications  Capture, code and analyse data, produce reports  Incrementally establish a Population Based Cancer Registry (PBCR) – gold standard – reporting to IARC  PBCR – surveillance of new cancer cases in a well defined population over time. Data collected from every health care facility where new cases of confirmed cancer is seen NEW CANCER REGULATIONS

7.  National Population Based Registry –resource intensive  Minimum of 4 PBCR’s for the South African population  Already established one pilot site in Ekurhuleni  3 million inhabitants  Diverse ethnic groups  Well demarcated area  6 public hospitals, 21 private facilities  Passive reporting  Response has been slow  Future plan for active reporting through recruitment of a surveillance officer POPULATION BASED CANCER REGISTRY

8.  Only data in SA of ALL cancer incidence and trends of cancers  International and national awareness– highlight the burden of cancer in SA and Africa  Individual analysis can be done to highlight vulnerable groups - children, teenagers or topics of interest such as lymphomas and leukaemia's  Information for government departments – 2002 data used to draft national cancer policy guidelines; plan for services, identify gaps, costing of services  Private sector – medical aids, life insurance, pharmaceutical companies  Research – baseline data, topics of interest. NCR keen to collaborate and share data DATA USES

9. OBSASRLR Kaposi’s12255.57205 Non Hodgkin’s7183.86242 Leukaemia2871.52686 Hodgkin’s1870.821412 Myeloma1280.781160 Burkitt’s490.215836 Haematology other360.185073 CANCER INCIDENCE RATES, MALES, 2006

10. OBSASRLR Kaposi’s9853.94316 Non Hodgkin’s6452.95341 Leukaemia2050.931189 Hodgkin’s1250.522305 Myeloma1130.581461 Burkitt’s560.235370 Haematology other220.119912 INCIDENCE RATES, FEMALES, 2006

11.  Classification of cancers – under review  Leukaemia’s reported together  Non-Hodgkin’s, Hodgkin’s and Burkitt’s Lymphoma  Need assistance of haematologists to decide on the categories  Bone Marrows – NCR receives bone marrow trephines but not the aspirates  Pathologists/haematologists need to code the sample as a malignancy (SNOMED/ICD) - coding is the basis on which samples are selected for reporting ISSUES OF IMPORTANCE:HAEMATOLOGY

12. QUERIES NCR  Email: elvira.singh@nioh.nhls.ac.za  Tel: 011489 9171  www.ncr.ac.za

13. THANK YOU