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REVISTA PANAMERICANA DE SALUD PÚBLICA PAN AMERICAN JOURNAL OF PUBLIC HEALTH Material suplementario / Supplementary material / Material supplementar Supplementary material to: Rose AM, Hambleton IR, Jeyaseelan SM, Howitt C, Harewood R, Campbell J, et al. Establishing national noncommunicable disease surveillance in a developing country: a model for small island nations. Rev Panam Salud Publica. 2016;39(2): 76-85. This material formed part of the original submission and has been peer reviewed. We post it as supplied by the authors. SUPPLEMENTARY MATERIAL Rose et al. • Implementing national NCD surveillance 1: Case definitions and variables collected Contents 1. Case definitions used by the BNR (all components) 2. Core and enhanced data items and residence definition used by the BNR 3. The case-defining form used by the BNR (stroke and acute MI components) 4. Brief outline of case report forms used by the BNR – stroke component 5. Brief outline of case report forms used by the BNR – acute MI component 6. The case report forms used by the BNR – cancer component 7. References 1. Case definitions used by the BNR (all components) (a) Stroke case definition for the BNR–Stroke Sudden onset of global or focal neurological deficit not resulting from trauma or injury, presumed to be vascular in origin and lasting at least 24h or leading to death (1). (b) Acute MI case definition for the BNR–Heart A definite acute MI is one which was identified in a clinical setting of myocardial ischaemia by either (a) diagnostic cardiac biomarkers with either clinical characteristics of an acute MI (and/or cardiac failure), imaging changes, or positive ECG; or (b) unexpected cardiac death; or (c) post coronary artery bypass graft or percutaneous coronary intervention with cardiac biomarkers five and three times threshold levels, respectively; or (d) pathological findings of an acute MI. (Adapted from Thygesen et al., 2007 (2).) (c) Cancer case definition for the BNR–Cancer The BNR–Cancer registered all in-situ and malignant neoplasms and select benign tumours of the brain, central nervous system, pituitary and pineal glands, and the craniopharyngeal duct for 2008 diagnoses only. 2. Core and enhanced data items and residence definition used by the BNR (a) Core and enhanced data items collected by the BNR–Heart and BNR–Stroke Core data include demographic information (age, sex, national registration number, address and contact details), vascular risk factors, clinical symptoms and signs, and results of laboratory and/or radiological diagnostic tests. Enhanced data items include information on additional risk factors (family history, tobacco and alcohol use), education level attained and employment. (b) Definition of “resident” used by the BNR (all components) For all registry components residency is defined, following the Barbados census, as those who have lived on the island for at least 6 of the previous 12 months (3). 1 Rose et al. • Implementing national NCD surveillance SUPPLEMENTARY MATERIAL 3. The case-defining form used by the BNR (stroke and acute MI components) Case-Defining Questions for Acute Myocardial Infarction (AMI) To be completed by medical staff for all suspected and confirmed AMI admissions and in-hospital AMIs. Please complete the entire form. Place an X in the box that indicates your response where required Hospital Reg. No._________________ ID No._______-______ Ward_______ Consultant _____________________ Patient’s Surname: First name: Initial(s): 1. Date and time of onset of first ischaemic symptom(s) for this event Date (dd/mm/yyyy) ____/_____/_____ □ Unknown Time (hr:min) ____: ____ (24 hr clock) 2. Cardiac biomarkers measured serially at ~6-9hr intervals 3. Number of cardiac biomarkers that showed a rise to or fall from a level above threshold (Threshold= upper lab reference limit for AST, CK-MB, CKMBm and > 0.1µg/L for troponins) Note: T0= onset time 1st symptoms (tick all that apply) □ None □ CK-MBm □ Troponin I □ Troponin T □ AST □ CK-MB □ None 4. Ischaemic region on ECG □ None □ Undetermined □ ≥2 (tick all that apply) □ None □ LBBB □ ST elevation (≥1.0mm) 1 2 □ ST depression □ T wave changes □ Pathological Q waves3 (II, III, aVF) (I, aVL, V6) □1 5. New ECG findings in at least two contiguous leads □ Posterior (Inferior) □ Anterolateral □ Unknown □ Anterior (V1,V2, 1Horizontal/down-sloping depression ≥1.0mm inversion of ≥1.0mm with R wave prominence or R/S 3Ratio>1)(≥0.04s and > ¼ of R wave amplitude V3,V4,V5) 2T □ Other Specify:_____________________ 6a. Was cardiac imaging (ECHO/ MRI) performed while the 7a. Has a definite diagnosis of an acute MI** been made? patient was in hospital? □ Yes □ No If ‘Yes’: 6b. Were new wall-motion abnormalities present on imaging? □ Yes □ No □ Unknown 8a. I have informed this patient or his/her relative(s)/carers about the BNR □ Yes □ No If ‘No’: 7b. What other diagnosis best explains the patient’s presentation?_______________________________ If ‘Yes’: 8b. Consent to being contacted by BNR staff has □ Yes □ No been granted □ Yes □ No 8c. Indicate whether consent granted/refused by □ Patient else Give name of relative/carer:_______________________________________________________ Signature: ________________________________ Date (dd/mm/yyyy):_____/_____/_____ Name: ____________________________________ Grade: □ SHO □ Reg. 2 □ Reg.1 □ Snr Reg. □Consultant **A definite AMI may be defined as (a) or (b) or (c) or (d) below, in a clinical setting of myocardial ischaemia: a) Diagnostic cardiac biomarkers1 with at least one of: Typical/atypical AMI symptoms and/or signs of cardiac failure Imaging changes (new wall motion abnormalities) Positive ECG2 b) Sudden (unexpected) cardiac death c) Post coronary artery bypass graft (CABG) or percutaneous coronary intervention (PCI) with cardiac biomarkers 5x and 3x threshold levels,** respectively d) Pathological findings of AMI 1 Diagnostic Cardiac Biomarkers are those with serial measurements 6-9 hrs apart, with a level above threshold that shows a rise/fall in levels over time. (**Threshold levels for biomarkers=upper lab reference limit for AST, CK-MB, CK-MBm and > 0.1µg/L for troponins). 2 Positive ECG=NEW findings in at least two contiguous leads of either evolving ST elevation (ST elevation ≥1.0mm), or evolving non-ST elevation (horizontal/ down sloping ST depression ≥1.0mm and/or T inversion of ≥1.0mm with R wave prominence or R/S ratio>1) or evolving pathological Q waves (≥0.04s and > ¼ of R wave amplitude) or LBBB. 2 SUPPLEMENTARY MATERIAL Rose et al. • Implementing national NCD surveillance Case-Defining Questions for Acute Stroke To be completed by medical staff for all suspected and confirmed stroke admissions and in-hospital strokes. Please complete the entire form. Place an X in the box that indicates your response where required Hospital Reg. No._________________ ID No._______-______ Ward_______ Consultant _____________________________________ Patient’s Surname _____________________________ First name ____________________________Initial(s) __________ 1. Date and time of onset of first stroke symptom(s) for this event Date (dd/mm/yyyy) ______/_______/______ □ Unknown 2. Time (hr:min) __ __: __ __ (24 hr clock) □Unknown 3. Did the patient have sudden-onset neurological impairment? □ Yes □ No □ Unknown 4a. Did stroke symptoms/signs last for 24 hours or more? □ Yes □ No □ Unknown 4b. OR Did symptoms/signs lead to death in less than 24 hrs? □ Yes □ No □ Unknown 5a. Has a definite diagnosis of an acute stroke** been made? □ Yes □ No If No: go to 5c If ‘Yes’: 5b. What stroke subtype was diagnosed, based on CT/MRI or other investigations? □ Ischaemic □ Primary Intracerebral Haemorrhage □ Subarachnoid Haemorrhage □ Unclassified (i.e. non-diagnostic CT/MRI, or no imaging/post mortem done) If ‘No’: 5c. What other diagnosis best explains the patient’s presenting signs/symptoms? _____________________________________________________________________________________________________ 6a. I have informed this patient or his/her relative(s)/carers about the BNR □ Yes □ No If Yes: 6b. Consent to being contacted by BNR staff has been granted 6b. Indicate whether consent granted/refused by: □ Patient □ Yes □ No else Give name of relative/carer:_______________________ Signature: ______________________________________ Date (dd/mm/yyyy):_______/______/_______ Name: __________________________________________ Grade : □ SHO □ Reg. 2 □ Reg.1 □ Snr Reg. □ Consultant **A definite diagnosis of acute stroke may be defined as the following: A focal or global neurological impairment of sudden onset lasting ≥24 hrs (or leading to death within 24 h) and of presumed vascular origin The WHO case definition for acute stroke excludes: Transient ischaemic attack (TIA), defined as focal neurological symptoms lasting ≤ 24h Subdural haemorrhage Epidural haemorrhage Poisoning Symptoms caused by trauma Now please notify the BNR of this patient by entering information in one of the notification books located on wards C5, C9, MICU, and A6, or A&E. Alternatively, please call the BNR HOTLINE at 256-4BNR (256-4267) 3 Rose et al. • Implementing national NCD surveillance SUPPLEMENTARY MATERIAL 4. The case report forms used by the BNR – stroke component Brief outline of data collected from stroke case report forms (CRFs) – full CRFs available on request from [email protected] CRF Scope of CRF A Patient demographic information (all patients): name, address, date-of-birth, age, sex, national registration number, marital status, residence status, contact details, next-of-kin information B1 Event information (all patients): symptoms, onset date and time, stroke subtype, imaging information, whether patient hospitalised B2 Hospital information (hospitalised patients only): ambulance details, hospital admission and ward details, Glasgow Coma Scale score, admission diagnosis, stroke history/family history, risk factors, diagnostic tests, hospital assessments, hospital complications B2M Medication information (hospitalised patients only): details of all medications received by patient (within 24 hrs of onset or admission and chronic use) B3 Death information (patients with fatal events in the community only): autopsy details, imaging information, subtype, cause(s) of death B4 Event information (patients with non-fatal events in the community only): subtype, diagnosis, community assessments, diagnostic tests, risk factors, history/family history, medication information (within 24 hrs of onset and chronic use) B5 Hospital discharge information (hospitalised patients only): date and time of discharge or death, cause(s) of death, intensive care dates and times (if applicable), hospital complications, final diagnosis, discharge medications, stroke unit information (if applicable) B6 Case-defining information (hospitalised patients only): rapidity of stroke onset, length of onset (whether at least 24 hrs), whether resulted in patient’s death, subtype information, consent to follow-up, physician information C1 28-day follow-up information (all patients): verbal consent details, information about interview process, vital status, cause(s) of death (deceased patients), domestic situation (surviving patients), information on residence, ethnicity, education, occupation, prior living situation, re-admission information (if applicable), modified Rankin assessment (pre-stroke and current), family history, risk factors (alcohol and tobacco) C2 1-year follow-up information (all patients): verbal consent details, information about interview process, vital status, cause(s) of death (deceased patients), domestic situation (surviving patients), re-admission information (if applicable), modified Rankin assessment 4 SUPPLEMENTARY MATERIAL Rose et al. • Implementing national NCD surveillance 5. The case report forms used by the BNR – acute MI component Brief outline of data collected from acute MI case report forms (CRFs) – full CRFs available on request from [email protected] CRF Scope of CRF A Patient demographic information (all patients): name, address, date-of-birth, age, sex, national registration number, marital status, residence status, contact details, next-of-kin information B1 Event information (all patients): symptoms, onset date and time, patient location at onset, cardiac arrest and resuscitation information (if applicable), diagnosis, whether patient hospitalised B2 Hospital information (hospitalised patients only): ambulance details, hospital admission and ward details, vital signs, admission diagnosis, acute MI history/family history, risk factors, diagnostic tests (up to 3 cardiac biomarkers with dates/times: Troponin and CK-MB/AST) B2E Hospital information (hospitalised patients only): Diagnostic tests (ECG details with dates/times), reperfusion information (with date/time), diagnosis information from casedefining form B2M Hospital information (hospitalised patients only): Diagnostic and therapeutic interventions, hospital complications, medication information (within 24 hrs of onset or admission and chronic use) B3 Death information (patients with fatal events in the community only): autopsy details, ECG information, cause(s) of death B4 Event information (patients with non-fatal events in the community only): diagnosis, ECG information, diagnostic and therapeutic interventions, risk factors, history/family history, diagnostic tests (up to 3 cardiac biomarkers with dates/times: Troponin and CK-MB/AST), medication information (within 24 hrs of onset and chronic use) B5 Hospital discharge information (hospitalised patients only): date and time of discharge or death, cause(s) of death, intensive care dates and times (if applicable), hospital complications, final diagnosis, discharge medications B6 Case-defining information (hospitalised patients only): date and time of onset of ischaemic symptoms, whether cardiac biomarkers measured serially, ischaemic region from ECG, cardiac imaging, diagnosis, consent to follow-up, physician information C1 28-day follow-up information (all patients): verbal consent details, information about interview process, vital status, cause(s) of death (deceased patients), domestic situation (surviving patients), information on residence, ethnicity, education, occupation, prior living situation, re-admission information (if applicable), family history, risk factors (alcohol and tobacco) C2 1-year follow-up information (all patients): verbal consent details, information about interview process, vital status, cause(s) of death (deceased patients), domestic situation (surviving patients), re-admission information (if applicable) 5 Rose et al. • Implementing national NCD surveillance SUPPLEMENTARY MATERIAL 6. The case report forms used by the BNR – cancer component Type of information Detail of information collected on CRF Patient demographics Name, address, date-of-birth, sex, national registration number, marital status, residence status, race, occupation Tumour Site of primary (with ICD-O code), histology(with ICD-O code), laterality, behaviour, basis of diagnosis Laboratory (where applicable) Laboratory number Histology (where applicable) Histology confirmation date NOT YET IN USE Site of mets, summary staging Treatment Initial treatment with date(s), other treatment with date(s), vital status, date of last contact/death; if deceased: date of autopsy Source Information source type, information source name, hospital/clinic number, consultant name, date of admission (hospital), date of first consultation (non-hospital: GP and surgeon) Incidence Incidence date Tests/procedures Type of examination/test/procedure, date and results Administrative Reviewers’ names and dates 7. References 1. World Health Organization. WHO STEPS Stroke Manual: The WHO STEPwise approach to stroke surveillance [Internet]. Geneva: WHO; 2006. Available from: http://www.who.int/chp/steps/Manual.pdf 2. Thygesen K, Alpert JS, White HD, Jaffe AS, Apple FS, Galvani M, et al. Universal definition of myocardial infarction. Circulation. 2007 Nov 27;116(22):2634–53. 3. Barbados Statistical Service. 2000 Population and Housing Census Report, Vol. 1. Government Printing Department, Barbados: Barbados Statistical Service; 2002. 6 SUPPLEMENTARY MATERIAL Rose et al. • Implementing national NCD surveillance 2: Methods Data management process: detail – from data collection to reports (Figure 1) Steps 1-3: Case ascertainment, data entry and verification. For all BNR components, data abstractor staff travel to multiple data sources to obtain information on suspected cases from hand-written patient records or notes, and for a few data sources (e.g. some private specialists), from computerised patient records. This information is entered directly into locally designed case ascertainment databases on laptop computers (one for each registry component; Step 2). There are principal data sources routinely visited for each registry component, but in addition to this active case ascertainment, passive notification is encouraged. Death information, for example, is received electronically from the national registration department; however, private physician notifications are rarely received. As it would be impossible to regularly visit every potential physician who may diagnose a patient with one of the NCDs on the registry, BNR administrative staff routinely perform telephone ‘call-rounds’ to secondary data sources, in order to obtain information on new cases, which is then entered onto the case ascertainment database. The data variables collected for each registry component’s ascertainment databases are listed in Supplementary Table 1. This information serves as ‘notification’ and allows the data abstractors to then obtain patient records for each notified (i.e. suspected) case. Abstractors use the information recorded in the patient’s notes to verify (Step 3) whether the patient has had a confirmed event (for whom complete data should be abstracted, see Step 4 below) or not (the reason why the suspected event was not confirmed is then recorded in the case ascertainment database). Case definitions used are provided in Supplementary File 1. Steps 4-5: Data abstraction and data entry. For the CVD component, data are abstracted from patient records onto pre-printed forms (Step 4) created using optical recognition software Cardiff TeleForm® v.10.4; HP Autonomy, San Francisco, CA, USA). On returning to the BNR office from the data source, paper forms containing abstracted data are then scanned into the system (‘data entry’; Step 5). For the cancer component, data are abstracted directly onto laptops (Steps 4 and 5 together) into a database using CanReg5 software provided by the International Agency for Research on Cancer (IARC; Lyon, France). For an outline of the data collected for each registry component, please see Supplementary File 1. Step 6. Quality control: review and verification. For the CVD component of the registry, first the BNR registrar reviews the paper forms, and any errors found are referred to the data abstractor for correction. This may involve simple changes to the form (e.g. transposition error for the year of abstraction) or require return to the data source for fuller completion (e.g. missing a page of information). Complex clinical queries are referred to each registry component’s Clinical Director for expert review. 7 Rose et al. • Implementing national NCD surveillance SUPPLEMENTARY MATERIAL Once forms have been reviewed, they are then batched and scanned. The scanned data are verified by on-screen comparison with the paper form for scanning or optical recognition errors. For the cancer component, initial data verification takes place at the time of data entry, as verification checks (based on the IARC/IACR check program (1)) are built into the IARC software. Similarly to the CVD component, the registrar reviews each abstraction, notifying the data abstractor of errors found; the difference here is that the reviews and subsequent corrections are conducted on electronic data. Steps 7-8: Data cleaning, analyses, interpretation and reporting. The CVD data are regularly exported from TeleForm (which automatically holds scanned data in a Microsoft Access database) into Stata v12 (Stata Corp., College Station, TX, USA) for cleaning. Data are cleaned and analysed prior to creation and dissemination of reports. Annual reports were prepared with a 2–3 year delay for the first 4 data years (2009– 2012). From 2012, quarterly reports comprising data from the case ascertainment database (preliminary data) as well as technical and staffing issues have been submitted to all members of the governing bodies. From 2013, quarterly ‘live’ data have also been produced from fully abstracted data. As national death data cannot be included in analyses until they are obtained from the National Death Register (after the end of the first quarter of each year, for all deaths occurring in the previous year), from 2013 onwards, complete annual data reports were completed between 9 months and 1 year from the end of the year in question. For example, the annual report for 2013 data was produced by the end of December 2014. The cancer registry component data will be exported to Stata from CanReg5, where, similarly to the CVD component, they will be cleaned and analysed prior to reporting. It is expected that the annual report for the first year of cancer data (2008) will be ready by the end of 2014. Annual reports are disseminated electronically to all medical professionals on the island registered with the Barbados Association of Medical Professionals, and paper copies distributed to colleagues in the MoH, polyclinics and several private physicians’ offices across the island. Information packaged in a more ‘general public-friendly’ way, including e.g. reports from survivors, has been compiled into regular (at least twice yearly) editions of the BNR newsletter, The Register. This is sent to all physicians and is placed in the public hospital and polyclinics across the island, as well as being disseminated to the general public during health fairs, public lectures and other similar events. Periodically, key facts from each year’s annual report have been sent to the Government Information Service (GIS) to be broadcast as part of the GIS regular health and wellness reporting slot in the televised media. Every year, once the annual report has been accepted by the MoH, a public lecture is held in which the data are presented to the general public. Data sources The BNR operates in an environment with limited electronic health records. Consequently, there is a focus on certain data sources to maximise cases retrieved, given the resource limitations. A previous study showed that two-thirds of stroke patients were retrieved from the single tertiary hospital on the island, and discussions with local cardiologists and other medical professionals revealed that all suspected acute MI patients would be referred to the public hospital. Hence the primary data sources for the 8 SUPPLEMENTARY MATERIAL Rose et al. • Implementing national NCD surveillance CVD components (stroke and acute MI) are this hospital, along with accident and emergency centres (public and private), as both CVDs are acute events requiring emergency attention. In addition, to ensure complete coverage within this setting, the public hospital Medical Records Department, and wards from both the public hospital and the private (for those who may have been admitted for elective surgery) are main data sources. Finally, the national death register is a major data source to obtain information on all those patients who may have died before reaching the hospital. Secondary data sources for the CVD components include other hospital departments and private physicians (see Supplementary Table 1). The cancer registry component, in contrast, has data collected retrospectively (non-acute events). In Barbados, as tumours should be diagnosed histologically where possible, the hospital laboratory is therefore a main data source, along with the national death register (for the same reasons as given above for the CVD components). In addition, as there may be patients treated for some tumours (particularly the usually non-fatal, non-melanoma skin cancers) entirely in the private sector, the single private hospital and private physicians are also a major data source for the cancer component (Supplementary Table 1). Private laboratories should be a primary data source but currently in Barbados they are not required by law to notify cancer (other than to the physician requesting the laboratory test); they are therefore listed as a secondary source. Data collection For each registry component, data are collected in a hierarchy of importance: core and enhanced. Core data are required for the calculation of basic registry indicators (incidence, mortality, and for the CVD patients, the proportion surviving to 28 days and 1 year). Enhanced data items include information on additional risk factors, education and employment (for further details, see Supplementary file 1). All cases (i.e. not just those with first-ever events) of all ages nationwide are registered, as long as they are Barbados residents. For all registry components residency is defined, following the Barbados census, as those who have lived on the island for at least 6 of the previous 12 months (13). The data collected for the cancer component include the minimum information required for a cancer registry, as specified by IARC (9), with some additional information (e.g. laterality and treatment information; see details from the data collection form for the cancer component in Supplementary file 1). Governance The BNR is governed by two advisory groups whose members include the National Chronic NCD Commission, insurance companies, private physicians, CVD special interest groups, the main public hospital and the MoH, as well as legal, ethical and pathology experts. From these groups the BNR receives regular advice on, and review of planning and implementation of BNR services and activities, as well as monitoring of BNR objectives and support with promotion and sustainability efforts. Communication and publicity In the early implementation stages, limited human resources meant that communication (including publicity) was limited, although this was acknowledged as key throughout the development of the BNR. Although inadequate, early publicity did include an official launch (in March 2009), open days targeting both the general public and the medical 9 Rose et al. • Implementing national NCD surveillance SUPPLEMENTARY MATERIAL community, development of a website (www.bnr.org.bb), and installation of a telephone Hotline, kindly donated by a local telecommunications company. In addition the director and registrar continue to provide television interviews, presentations and face-to-face meetings with audiences encompassing healthcare professionals, decision-makers, and the general public. The key message has focused on the uniqueness of our NCD surveillance system both regionally and internationally, and its usefulness for monitoring the health of all Barbadians. Communication with the public and the medical community require a targeted and professional strategy from personnel with training in health promotion activities. Staff recruited for routine health surveillance would not necessarily have such specialised training (and, even if they did, might not have the time to design publicity activities in addition to their surveillance duties). Health promotion activities which target public awareness of the future system, particularly responding to the ethical concerns of the public, may not be considered, and hence not budgeted for, in the design of a public health surveillance system. Human resources Human resource costs are shared between the regional university (The University of the West Indies) and the Barbados Government (Figure 3 shows the BNR team structure). The BNR has one director (now part-time for 0.6 FTE or “full-time equivalent”; i.e. 3 days per week) providing overall leadership for all three components. Each registry component also has a 0.05 FTE clinical director (one-half of a day per fortnight), providing clinical advice in his or her area of expertise. Making use of a national surveillance system One of the major registry achievements has been its usefulness in both the identification and the addressing of training needs for medical professionals. With the guidance of the National Chronic NCD Commission, and with input from the Barbados MoH and the Pan American Health Organization, the BNR team has implemented a series of training seminars for medical professionals, the first of which, in May 2010, targeted diagnosis of an acute MI. Through these seminars, valuable feedback on current diagnostic practice and documentation has been provided to medical personnel. Sessions of the BNR Continuing Education Seminar Series are now held regularly, once training needs are identified from the data. The first in the series was repeated in September 2010. Another seminar, covering ECG diagnoses for acute MI, was held in January 2011. The third in the series, focusing on death certificate documentation, was conducted in February and repeated in May 2011. The first seminar on a cancer topic (covering male genitourinary cancer management) was held in 2012, with the second (on breast cancer management) in 2013. The first stroke-themed seminar, on acute stroke management, was held in 2012 and the second in 2014. Continuing Professional Education (CPE) credits have been awarded for these seminars since 2012. Another major benefit is that the registry has played a key part in identifying the need for a standardised protocol for death certification in Barbados. The development of this protocol was spearheaded by the MoH after the death certification seminars highlighted the need for clarity in the correct procedure to be followed after certain deaths, e.g. someone who has died while visiting the island from overseas. 10 SUPPLEMENTARY MATERIAL Rose et al. • Implementing national NCD surveillance References 1. Ferlay J, Burkhard C, Whelan S, Parkin DM. Check and conversion programs for cancer registries. Lyon, France: WHO, IARC, IACR; 2005 p. 46. Report No. 42. Available from: http://www.iacr.com.fr/TechRep42-MPrules.pdf Supplementary Table 1. Required variables for BNR case-finding databases BNR–Stroke and BNR–Heart BNR–Cancer Registry identification number Record identification number Notification source Notification source Retrieval source Retrieval source First, middle and last names First, middle and last names Age Age Sex Sex Date of birth Notification type National identification number Case-finding date Notification date Site Hospital admission date Year diagnosed Hospital number Eligibility for registration Ward Initial diagnosis Name of doctor Case status Hospital status Event (stroke/acute MI) Date of death/discharge 11