title: [A coronary disease registry. The fundamental basis for its control].
abstract: A register may be a list in which each item is individually identified, corresponding to uniform information about individual persons, collected in a systematic way, in order to serve predetermined purposes. However, disease registration, more than "notification", requires a permanent record for cases to be followed-up and statistical analysis to cover the frequency and survival. The register requires information to be up-to-date for individual and general disease surveillance. Nevertheless, on establishing a register, it is fundamental to define the purposes within the main areas of interest: identification of individuals; protection of the individual; surveillance; epidemiology (incidence; distribution, etiology, diagnosis, prognosis, prevention, analysis of benefits and risks); planning and evaluation of health care services; evaluation of treatment; research; education; development of methodology. The advantages of developing a coronary heart disease register are multiple: standardization of methods, accessibility to a database resulting from a multicentric study (inter-center cooperation and participation), definition of the problem magnitude, acquisition of a large range of concrete knowledge. The aims of registers determine the data to be recorded and the analysis. Before starting a Myocardial Infarction Register, or a register for another specified disease, we need to establish some questions: Who should be registered? What data should be recorded? How many cases? Where can they be established?, and when? The functioning of a register is based on the following steps: definition of criteria introduced; mode of detection; initial examination; follow-up (annual?) and computer system. The organization and maintenance of a disease register is not easy (in terms of time, money and personnel). Therefore, a successful register should be established when the previous conditions are fulfilled and if the required information (aims) cannot be obtained by other means. Even so, problems may occur in case-finding (sub-registration is the principal risk) and certainty of diagnosis or during the follow-up (data loss and patient drop-out). It is essential to maintain the efforts to guarantee the quality of the data and the surveillance of the patients that entered the study. Thus, a coronary heart disease (myocardial infarction) register may be fundamental for its control and, simultaneously, it forms an important part of the health information systems.
authors.affiliation: Hospital Militar Principal, Serviço de Cardiologia, Lisboa.
authors.forename: E
authors.initials: E
authors.lastname: Rocha
mesh_terms: D003327:Coronary Disease / Q000175:diagnosis / Q000453:epidemiology*; D003625:Data Collection / Q000379:methods; D005500:Follow-Up Studies; D006801:Humans; D009017:Morbidity / Q000639:trends; D009026:Mortality / Q000639:trends; D009203:Myocardial Infarction / Q000175:diagnosis / Q000453:epidemiology; D011174:Portugal / Q000453:epidemiology; D012042:Registries / Q000706:statistics & numerical data; D009626:Terminology as Topic