Do we need clinical registries?

Abstract

This editorial refers to ‘Heart failure in young adults: 20-year trends in hospitalizations, aetiology, and case fatality in Sweden’, by A. Barasa et al. doi:10.1093/eurheartj/eht278 In recent years the numbers of observational reports in the medical field have exploded. Several reasons might explain such a huge increase in observational clinical research. First, the increasing expectations of people regarding their national health systems associated with their exponential cost and, consequently, the need to know how the declining resources are used. Secondly, understanding the current epidemiology of diseases and therapies to make reasonable estimates of the needs for care and expenditure in the future. Thirdly, to allow physicians and scientists to learn more about the incidence and course of diseases by observing ‘clinical practice’ What is ‘clinical practice’? Clarifying this is important in order to interpret the observational findings correctly. As elegantly reported by Gabbay et al., 1 the majority of clinicians rarely access and use explicit evidence from research or other sources directly. They instead rely on ‘mindlines’ generated by a number of sources of varying degrees of reliabitiy, collectively reinforced, resulting in individual ‘internalized, tacit, guidelines’. These can be far removed from the official recommendations; however, they guide the physician in his clinical practice. A similar process also of course applies to the patient; mixing information obtained from different sources leads to individual beliefs guiding patient behaviour (i.e. acceptance of treatment and adherence both to prescribed medications and an appropriate lifestyle over time). All this results in so-called ‘clinical practice’, which is the object of observational medical research. On the therapeutic front, clinical practice lies in both physician prescriptions (adherence to guideline recommendations) and patient …