title: Surveillance Evaluation of the National Cancer Registry in Sabah, Malaysia.
abstract: BACKGROUND
  Cancer is the fourth leading cause of death in Sabah Malaysia with a reported agestandardized incidence rate was 104.9 per 100,000 in 2007. The incidence rate depends on nonmandatory notification in the registry. Underreporting will provide the false picture of cancer control program effectiveness. The present study was to evaluate the performance of the cancer registry system in terms of representativeness, data quality, simplicity, acceptability and timeliness and provision of recommendations for improvement.
  
  
  METHODS
  The evaluation was conducted among key informants in the National Cancer Registry (NCR) and reporting facilities from FebMay 2012 and was based on US CDC guidelines. Representativeness was assessed by matching cancer case in the Health Information System (HIS) and state pathology records with those in NCR. Data quality was measured through case finding and reabstracting of medical records by independent auditors. The reabstracting portion comprised 15 data items. Selfadministered questionnaires were used to assess simplicity and acceptability. Timeliness was measured from date of diagnosis to date of notification received and data dissemination.
  
  
  RESULTS
  Of 4613 cancer cases reported in HIS, 83.3% were matched with cancer registry. In the state pathology centre, 99.8% was notified to registry. Duplication of notification was 3%. Data completeness calculated for 104 samples was 63.4%. Registrars perceived simplicity in coding diagnosis as moderate. Notification process was moderately acceptable. Median duration of interval 1 was 5.7 months.
  
  
  CONCLUSIONS
  The performances of registry's attributes are fairly positive in terms of simplicity, case reporting sensitivity, and predictive value positive. It is moderately acceptable, data completeness and inflexible. The usefulness of registry is the area of concern to achieve registry objectives. Timeliness of reporting is within international standard, whereas timeliness to data dissemination was longer up to 4 years. Integration between existing HIS and national registration department will improve data quality.
authors: Community and Family Medicine Department, Faculty of Medicine and Health Sciences, Universiti Malaysia Sabah, Kota Kinabalu, Malaysia Email : saffree@ums.edu.my.
authors: Saffree Mohammad
authors: SM
authors: Jeffree
authors: Omar
authors: O
authors: Mihat
authors: Khamisah Awang
authors: KA
authors: Lukman
authors: Mohd Yusof
authors: MY
authors: Ibrahim
authors: Fadzilah
authors: F
authors: Kamaludin
authors: Mohd Rohaizat
authors: MR
authors: Hassan
authors: Nirmal
authors: N
authors: Kaur
authors: Than
authors: T
authors: Myint
mesh_terms: D005260:Female; D006801:Humans; D008296:Malaysia / Q000453:epidemiology; D008297:Male; D009369:Neoplasms / Q000453:epidemiology*; D011159:Population Surveillance / Q000379:methods; D015397:Program Evaluation / Q000379:methods; D012042:Registries; D011795:Surveys and Questionnaires; D013997:Time Factors