Systematic review of the utility of real world data based on patient registries - Heart failure first topic
16 Feb 2017

We are starting a project is to evaluate the existing knowledge on real word evidence based on patient registries through literature review. The first project will be about heart failure. We are currently evaluating what other areas we should cover. Let us know if you have special areas of interest. 

We are intended to answer the following questions regarding the patient registries:

  • What patient registries are available for a certain disease/intervention?
    • In some projects, we will focus the analysis only on Sweden in other where feasibly we will either do a European or Global analysis.
  • What data is available and what is the quality level:
    • Is the coverage, data volume and follow-up time sufficient? Is the data quality validated with external resource routinely?
    • What kind of clinical parameters are included in the dataset?
    • Are patient-reported outcomes reported? if yes, which instrument is used?
    • Is it possible to perform linkage between different dataset in that country?

We will then evaluate the studies that have been carried out based on these datasets, to have an overview about what has been done in this area. We would like to know, for examples:

  • What is the purpose of the study, is it to evaluate and compare treatments? Or to predict health outcomes?
  • What predictors are included, e.g. disease severity, co-morbidity, patient socio-demographic characteristics?
  • Is resource utilization taken into consideration? Does it provide information regarding value-based health care?
  • Which kind of statistical method are used? Are these methods the optimum way of addressing the research question?

The findings will be summarized in a comprehensive report/publication, together with the search strategy, and search database(s), and the date and number of hits.