Dr E Singh, NCR, NHLS

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

2. NATIONAL CANCER REGISTRY • 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

3. NATIONAL CANCER REGISTRY • 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

4. DATA MANAGEMENT PROCESS

5. CURRENT STATUS • 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

6. NEW CANCER REGULATIONS • 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

7. POPULATION BASED CANCER REGISTRY • 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

8. DATA USES • 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

9. CANCER INCIDENCE RATES, MALES, 2006

10. INCIDENCE RATES, FEMALES, 2006

11. ISSUES OF IMPORTANCE:HAEMATOLOGY • 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

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

13. THANK YOU