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Dr E Singh, NCR, Dr E Singh, NCR, NHLSNHLS
REVITALISING THE 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
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
NATIONAL CANCER REGISTRY
DATA MANAGEMENT PROCESS
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
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
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
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
OBS ASR LR
Kaposi’s 1225 5.57 205
Non Hodgkin’s 718 3.86 242
Leukaemia 287 1.52 686
Hodgkin’s 187 0.82 1412
Myeloma 128 0.78 1160
Burkitt’s 49 0.21 5836
Haematology other
36 0.18 5073
CANCER INCIDENCE RATES, MALES, 2006
OBS ASR LR
Kaposi’s 985 3.94 316
Non Hodgkin’s 645 2.95 341
Leukaemia 205 0.93 1189
Hodgkin’s 125 0.52 2305
Myeloma 113 0.58 1461
Burkitt’s 56 0.23 5370
Haematology other
22 0.11 9912
INCIDENCE RATES, FEMALES, 2006
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
THANK YOU
