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On behalf of the Barbados Ministry of Health

The Barbados National Registry for Chronic Non-Communicable Disease: a collaboration with the Barbados Ministry of Health. Angela MC Rose, Director, BNR. PAHO-IARC training Trinidad, 18-20 April 2010. On behalf of the Barbados Ministry of Health. Outline. Background CNCDs in Barbados

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On behalf of the Barbados Ministry of Health

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  1. The Barbados National Registry for Chronic Non-Communicable Disease: a collaboration with the Barbados Ministry of Health Angela MC Rose, Director, BNR PAHO-IARC training Trinidad, 18-20 April 2010 On behalf of the Barbados Ministry of Health

  2. Outline Background CNCDs in Barbados Cancer data in the Caribbean and Barbados Barbados MoH CNCD strategy Barbados National Registry for Chronic Non-communicable Disease (BNR) Update on BNR progress Working towards a Caribbean centre of excellence On behalf of the Barbados Ministry of Health

  3. Background – I • The BROS study (2001-4) • Population-based stroke registry • Research study • In collaboration with SLSR On behalf of the Barbados Ministry of Health

  4. Background – II CMO’s Annual Report 2002-2003 CVDs and malignant neoplasms the leading causes of morbidity and mortality among adults in Barbados On behalf of the Barbados Ministry of Health

  5. CNCD baseline mortality: Methods (2005) Retrospective data collection: two sources MoH death certificate copies (limited data) Death Register (more info) Data collected for all persons listed with Any of AMI, stroke and cancer as a cause of death 5 In collaboration with the Barbados Ministry of Health

  6. CNCD baseline mortality: Results Number 1486 deaths (804 women, 682 men) Crude rate/100 000 (standardised to world) Stroke (ICD-10 codes I60-64): 108.0 (89.8) AMI (ICD-10 codes I20, I21): 50.6 (47.3) Cancer (ICD-10 codes C00-97): 190.7 (179.2) 6 In collaboration with the Barbados Ministry of Health

  7. Cancer data in the Caribbean There are no data from the English-Speaking Caribbean in “Cancer Incidence in Five Continents” On behalf of the Barbados Ministry of Health

  8. Coverage is patchy • Cancer surveillance systems in: • Jamaica (1954 – current) (Regional) • Trinidad (1995 – current) (National) • Bermuda (1991 – current) (?) • Barbados (2010) • Also in Cuba, Martinique, Dutch Antilles, Suriname • Major risk factor studies in: • Tobago (prostate), Barbados (prostate, breast) On behalf of the Barbados Ministry of Health

  9. GLOBOCAN Breast cancer 2002 Incidence* Mortality* All W. Africa 28 20 All Caribbean 33 13 - Jamaica 44 18 - Trinidad & Tobago 51 21 - Barbados 63 26 - United States 101 19 (*per 100 000 population) On behalf of the Barbados Ministry of Health

  10. Barbados National Cancer Study (BNCS) • Population-based • Comprehensive • Case-control • Epidemiologic and genetic risk factors • Collaboration between SUNY at Stony Brook (Co-ordinating Centre), UWI, the National Genome Research Institute and the Barbados MoH On behalf of the Barbados Ministry of Health

  11. Cancer data in Barbados Breast cancer incidence by age-group: Barbados (2002-6) vs USA (2000-4)

  12. Cancer data in Barbados Breast cancer mortality by age-group: Barbados (1994-2004) vs USA (2000-4)

  13. The MoH CNCD strategy National Task Force on CNCDs (2004) mechanism for CNCD prevention/control National CNCD Commission key strategy: national CNCD registries outcome of BNCS, BROS: population-based registries CDRC invited to develop and operate the BNR essential tools to advise on CNCD policy and legislation On behalf of the Barbados Ministry of Health

  14. The BNR: overall objective To collect timely and accurate national data on the occurrence of cancer, stroke and acute myocardial infarction (AMI), in order to contribute to the prevention, control and treatment of these diseases in Barbados On behalf of the Barbados Ministry of Health

  15. The BNR: specific objectives • Create and maintain high quality database • Regular reporting (incidence and mortality) • establish baseline levels (estimate current burden) • monitor trends • Use data effectively for epidemiological and clinical research • estimate future disease impact • investigate interventions and/or preventative measures On behalf of the Barbados Ministry of Health

  16. The BNR – Heart and BNR – Stroke • Population-based CVD registries • Collecting information on all events nationwide • BNR – Stroke began in July 2008 • BNR – Heart pilot from May 2009 On behalf of the Barbados Ministry of Health

  17. Methods: BNR – CVD Data collection follows WHO’s STEPS Stroke Surveillance model in hospital; fatal in community; non-fatal in community Abstraction triggered by notification follow-up at 28 days and 1 yr post event Pre-printed CRFs scanned in after abstraction bespoke databases for processing and analysis Medical staff assist with case definition On behalf of the Barbados Ministry of Health

  18. Once the form has been designed, printed SUMMARY OF OVERALL DATA MANAGEMENT PROCESS VERIFY EXPORT Once data have been verified there is automatic export to a secure database Invalid or unrecognisable data are highlighted during verification and filled in, by Data Abstractors SECURE DATABASE Where images of original forms are also exported Data are converted from paper to an electronic image

  19. BNR – Cancer: Progress Methodology • Following IARC • CanReg database • Retrospective data collection • Start: April 2010 On behalf of the Barbados Ministry of Health

  20. What the BNR – Cancer could achieve Paint a picture of cancer burden Link system outputs with planning decisions Create social dialogue around cancer lessen taboo? Provide information for optimisation of health services On behalf of the Barbados Ministry of Health

  21. The Caribbean challenge Bahamas: 325,000 Jamaica: 2 780 000 Montserrat: 9500 Barbados: 270 000 Trinidad & Tobago: 1 056 000

  22. The Caribbean challenge Constraint Possible solutions LIMITED FINANCES Think regionally… “We have no money” “It’s not cost-effective” LIMITED PERSONNEL “We have no staff” LIMITED EXPERTISE “We’re not sure how”

  23. What we can aim for Establishment of regional centre(s) of clinical excellence assess attainment of regional targets for cancer services provision studies of variation in cancer occurrence between different geographical areas or over time routinely contribute incidence and survival data to international collaborations On behalf of the Barbados Ministry of Health

  24. A Caribbean network: Cancer resource centre • The right time? • There is political support • Port of Spain Declaration • Caribbean Wellness Conference • There is a consensus that better information is needed • Caribbean Health Information Systems • PAHO HRH

  25. A Caribbean resource centre • Important economies of scale • A focus on training / ongoing skill transfer • In-house expertise / capacity building • Small numbers of cases: Caribbean reports Action plan Develop goals and indicators and increase Caribbean participation

  26. Summary • Increase in CNCDs in LAC • Few cancer data in the region • Political support in Barbados → BNR • Now is the time for Caribbean network?

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