Page 13 - PATIENT REGISTRY DATA FOR RESEARCH: A Basic Practical Guide

Chapter 1 - Background

Clinical researchers aim to make consistent efforts to continuously search for new and

improved methods to fight against all human diseases in order to achieve better clinical

outcomes for mankind. Therefore, it is mandatory for researchers in the medical field to

continuously improve their choice of research design to be adopted for their clinical studies.

One of the most important ways for a clinical researcher to gain a better understanding of the

epidemiology of a disease is to develop a clinical data registry for that disease and then

conduct a registry-based study. The WHO defines a patient registry as "a file of documents

containing uniform information about individual persons, collected in a systematic and

comprehensive way, in order to serve a pre-determined scientific, clinical or policy purpose"

(Brooke, 1974).

On the other hand, The US National Committee on Vital and Health Statistics defines

a patient registry as "an organized system for the collection, storage, retrieval, analysis, and

dissemination of information on individual persons who have either a particular disease, a

condition (e.g., a risk factor) that predisposes them to the occurrence of a health-related

event, or prior exposure to substances (or circumstances) which are known or suspected to

cause adverse health effects" (National Committee on Vital and Health Statistics, 2019). In its

simplest form, a patient registry consists of a collection of records that were traditionally kept

as hard copy files and stored in cupboards; however, nowadays, all the data in these registries

are usually compiled and then transformed into computerized data to be kept in a database.

A patient registry can adopt a different design depending on the objective for which

the registry is created. For example, some registries require patients to be followed up for a

period of time, usually years, in order to enable researchers to monitor the course of a

disease, its treatment outcome and the survival of patients (Lim et al., 2008; Wan-Ahmad &

Liew, 2016). On the other hand, there are other registries that are designed as a