Page 14 - PATIENT REGISTRY DATA FOR RESEARCH: A Basic Practical Guide

cross-sectional study in which the data was gathered only once, of which the suicide registry

is a good example (Ali et al., 2014).

Previously a patient registry usually aimed to focus mainly on collecting the

administrative records of patients and was only collecting minimal data on clinical care.

Nowadays, there is a growing impetus for advancement in knowledge of medical care via

conducting useful and relevant clinical research, and along with the advent of modern-day

technology. This has resulted in a tremendous increase in the variety and volume of data

variables that are collected and stored in a patient registry (Pillay et al., 2008).

A patient registry is specifically designed to store all relevant data from a list of

patients with a common medical condition. Since it contains a list of patients who share the

same disease presentation with the same medical condition, therefore it can further be

categorized by the disease (i.e. disease registry) or by the specific exposure to drug treatment

(i.e. drug registry). Both these types of registries can prospectively collect a wide variety of

information by using standardized questionnaires. Thus, both will have tremendous potential

for enabling researchers who are working in the medical field to answer many important

research questions pertaining to clinical practice. Studies based on registry data can often be

used as a basis for decision-making purposes by providing a real-world view of various types

of outcomes from clinical practices and healthcare services. Such purposes of registry-based

research include quality improvement, benchmarking, clinical (or epidemiological) research,

clinical effectiveness, cost-effectiveness, device surveillance, treatment surveillance and

population surveillance.

Patient registry data can have a profound potential for answering dozens of research

questions. However, the process of conducting a research study by using registry data can be

very challenging. First and foremost, most of the time these registry data are not owned by

the researchers. So, the researchers will need to formally request permission to gain access to