The Barbados National Registry for Chronic Non-Communicable Disease: a collaboration with the Barbados Ministry of Health Angela MC Rose, Director, BNR Christina Howitt, Registrar, BNR Cancer PAHO-IARC meeting Brasilia, 13-14 October 2009
Outline Background CNCDs in Barbados Cancer data in the Caribbean and Barbados Barbados MoH CNCD strategy Barbados National Registry for Chronic Noncommunicable Disease (BNR) Update on BNR progress Working towards a Caribbean centre of excellence
Background I The BROS study (2001-4) Population-based stroke registry Research study In collaboration with SLSR
Background II CMO s Annual Report 2002-2003 CVDs and malignant neoplasms the leading causes of morbidity and mortality among adults in Barbados
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 In collaboration with the Barbados Ministry of Health 5
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) In collaboration with the Barbados Ministry of Health 6
Cancer data in the Caribbean There are no data from the English-Speaking Caribbean in Cancer Incidence in Five Continents
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)
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) 9
Barbados National Cancer Study (BNCS) Population-based Comprehensive Case-control Epidemiologic and genetic risk factors Collaboration between SUNY at Stony Brook (Coordinating Centre), UWI, the National Genome Research Institute and the Barbados MoH 10
Cancer data in Barbados Breast cancer incidence by age-group: Barbados (2002-6) vs USA (2000-4)
Cancer data in Barbados Breast cancer mortality by age-group: Barbados (1994-2004) vs USA (2000-4)
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
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
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
The BNR Heart and BNR Stroke Population-based CVD registries Collecting information on all events nationwide BNR Stroke July 2008 BNR Heart pilot May 2009
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
Once the form has been designed, printed VERIFY SUMMARY OF OVERALL DATA MANAGEMENT PROCESS 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 Data are converted from paper to an electronic image Where images of original forms are also exported
BNR Cancer: Progress Methodology Following IARC CanReg database Retrospective data collection Proposed start: early 2010 19
What the BNR Cancer could achieve Improvement in quality of life of those affected Linkage of system outputs with planning decisions Improvement of social policy through optimisation of health services
What the BNR Cancer could achieve Reduction in hospital and other costs Reduction of avoidable mortality Lessening of disability Lower incidence through promotion of prevention Estimation of annual cancer-related drug costs to inform health services resources
The Caribbean challenge Bahamas: 325,000 Jamaica: 2 780 000 Montserrat: 9500 Barbados: 270 000 Trinidad & Tobago: 1 056 000
The Caribbean challenge Constraint Possible solutions LIMITED FINANCES We have no money It s not cost-effective Think regionally LIMITED PERSONNEL We have no staff LIMITED EXPERTISE We re not sure how
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
A Caribbean 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
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
Summary Increase in CNCDs in LAC Few cancer data in the region Political support in Barbados BNR Now is the time for Caribbean centre of excellence?