Comparative study of epilepsy registry system in America, England, Australia, and Iran

Abstract

BACKGROUND:

Disease registries are one of the important steps in the development of health information systems. The aim of this study was to compare epilepsy registration systems in the United States, England, and Australia and propose a National Epilepsy Registry System for Iran.

MATERIALS AND METHODS:

This study was a descriptive–comparative study conducted between 2020 and 2023, which involved the following steps: identification and selected countries with advanced registry systems in the world and Identification of their characteristics and comparison with each other. The research population included the epilepsy registration registry in Australia, England, the United States, and Iran. In this study, data were collected from forms, observations, and documents.

RESULTS:

In Australia, all databases, reports, and minimum datasets are electronically sent to the Australian Epilepsy Register. In England, the Epilepsy Society is responsible for collecting information. In the United States, all individuals with epilepsy voluntarily send their information to registry centers and the Epilepsy Society to help with their treatment. However, there is no national epilepsy registry system in Iran. Therefore, recommendations have been made to establish.

CONCLUSION:

Registration systems can help collect and analyze data related to all patients with a particular disease. When this registration is established at the national level, it becomes a valuable clinical tool for improving the quality of care and can be a significant step toward managing care for epilepsy patients and healthcare centers. Indeed, such a system can also help in preventing the onset of epilepsy and planning for the improvement of the quality of life for patients.

Introduction

Epilepsy is one of the most common neurological disorders affecting the brain, and it can occur at any age, race, and social class. Therefore, the health information system must manage and control it through processing, analyzing, and interpreting the data.[1] Given the high prevalence of epilepsy in Iran and the associated costs, appropriate measures must be taken to address the challenges facing the population. Planning and policymaking for the development of comprehensive healthcare services for these patients are essential.[2] There are approximately 50 million people with epilepsy worldwide, and in developed countries, the prevalence is between 7 and 4 cases per 1,000 people. These data were collected from 195 countries between 1990 and 2016.[3] Epilepsy also has a relatively high prevalence in Iran, and studies conducted in 2016 have shown that the overall prevalence of epilepsy is 5% in Iran. It has been estimated that the prevalence is 3% in people under 20 years old and 6% in people over 20 years old.[4] Registration systems are organized systems for collecting, storing, retrieving, analyzing, and distributing information about diseases, which have specific conditions.[5] Generally, growth and development in any system, including the country’s healthcare system, are meaningless without an information system.

A disease registration system is a structured database and system for collecting, storing, retrieving, analyzing, and disseminating information on individuals with a specific disease or individuals exposed to known substances in a population.[6] Managers and policymakers in such systems require comprehensive, sufficient, accurate, and up-to-date information for planning. The healthcare system of any country is capable only when it can, to the best of its ability, prevent preventable diseases and deaths with the cooperation of other sectors in national development.[6] Currently, there are no accurate statistics on the prevalence and incidence of epilepsy in Iran, which may be due to the absence of a data management and registration system. Therefore, given the necessity of having a registration system, a comprehensive list of data has been created for collecting data on epilepsy patients. The aim of this study was to compare epilepsy registration systems in the United States, England, and Australia and propose a National Epilepsy Registry System for Iran.

Materials and Methods

Study design and setting: This study was a descriptive–comparative study in which the data were collected using raw tables, observation, and documents. The study was conducted from 2020 to 2023. Study participants and sampling: The method of identifying and selecting countries with the leading registration system in the world, identifying their characteristics, and comparing them with each other was the working method. The research population for epilepsy registration in this study included Australia, the United Kingdom, the United States, and Iran. Our sampling was based on an easy and available epilepsy registry. Therefore, researchers chose the USA, England, and Australia, where epilepsy registries were in English and available. The study source data included relevant websites, articles, books, databases, and experts from selected countries related to epilepsy registration. Some of these websites include the National Epilepsy Center Registry in America (NAEC), the Epilepsy Australia Registry (EAA), and the UK’s Epilepsy Death Register (EDR). Data collection tool and technique: In addition, experts who are in charge of answering the questions from different countries were consulted via email and filled out forms. The reliability of the forms was confirmed by health information management experts and neurology specialists throughout Iran. The advantages and limitations of each system were compared by referring to various scientific and international articles and examining the opinions of domestic and foreign researchers. The analysis was descriptive–theoretical. Ethical consideration: Data were gathered through informed consent.

Results

Based on the reports and findings of this research, there are three areas in the world that have conducted epilepsy registration. Table 1 shows the purpose of creating a registration system in selected countries.

Table 1.

Objectives of establishing epilepsy registration system in selected countries

USA		UK		Australia
- Improving the health of individuals - Increasing the quality of life for people with epilepsy - Preventing individuals from being affected by health and social abnormalities - Preventing premature death of people with epilepsy[7]		- Improving public awareness of the risks associated with epilepsy and SUDEP - Prioritizing and identifying new research - Decision-making to improve services - Improving counseling and treatment programs[8]		- Improving access to epilepsy care and reducing gaps in treatment - Reducing discrimination against people with epilepsy - Improving the quality of care and follow-up for epilepsy patients[9]

Based on the findings, the goal of establishing an epilepsy registration system in these three countries was to improve understanding and awareness of epilepsy, monitor the prevalence and incidence of epilepsy, and increase prevention strategies and quality of life for patients and their families. The structure of the national epilepsy registration system in different countries is shown in Table 2. However, Iran does not have a national system for registering epilepsy information.

Table 2.

Structure of epilepsy registry system in selected countries

Criteria		UK		Australia		USA
Objectives of registration system		• Improving public awareness of the risks associated with epilepsy and SUDEP • Prioritizing and identifying new research • Decision-making to improve services • Improving counseling and treatment programs[8]		• Improving access to epilepsy care and reducing gaps in treatment • Reducing discrimination against individuals with epilepsy[9]		• Improving the health of individuals • Enhancing the quality of life for people with epilepsy • Preventing individuals from being affected by health and social abnormalities • Preventing premature deaths of people with epilepsy[7]
Organizations responsible for epilepsy registration system		Epilepsy Society (England, Wales, and Scotland)[8]		National Institute for Neurological Disorders and Stroke[9]		National Institutes of Health (NIH)[7]
Strategic registration committee structure		• Researchers, state and local government physicians in the UK • Dr. Henry Smithson and his research team at the University of Sheffield[8]		• Committee on Public Health Dimensions of Epilepsy • European Epilepsy Research Consortium[9]		• American Epilepsy Foundation • Centers for Disease Control and Prevention (CDC) research centers for epilepsy prevention[7]
Data sources		UK Epilepsy Registry Centers[8]		Australian Registry Centers[9]		American Epilepsy Registry Centers[7]
Patient identification mechanism		Patients and their close contacts provide their information to treatment centers[8]		Through physician offices, patient names are recorded[9]		All individuals with epilepsy voluntarily submit their information to registry centers for assistance with their treatment[7]
Patient follow-up methods		Completed online questionnaire information is submitted to the UK registry website by individuals with epilepsy[8]		Contacting patients with epilepsy, sending and completing questionnaires, both remotely and in-person interviews[9]		Through surveys and interviews with patients to study new cases of epilepsy to identify the number of epilepsy patients[7]
Data collection method		Online website		Online website		Online –website
Data entry method		Type		Type		Type
Reporting, publishing, and distributing to users		Published annually through the Epilepsy Society in the UK[8]		Published annually through the National Institute for Neurological Disorders and Stroke in Australia[9]		Published annually through the National Institute of Health in the USA[7]
Data quality control		Checking data accuracy using the comprehensive knowledge bank[8]		Checking data accuracy using the comprehensive epilepsy registry database[9]		Checking data accuracy through the National Health Interview Survey (NHIS)[7]
Principles of confidentiality and information security		The center for maintaining epilepsy patients has a unique username and password for processing and retrieving information[8]		Organizations involved in data collection have a unique username and password for processing and retrieving information[9]		Organizations involved in data collection have a unique username and password for processing and retrieving information[7]

Based on the findings, the purpose of establishing the epilepsy information recording system in the United States is to better understand epilepsy, increase the potential and quality of life for epilepsy patients and their families, and reduce the prevalence of epilepsy. In the UK, the goal is to develop monitoring of the epilepsy process, distribute knowledge about epilepsy through epidemiological data, and provide clinical descriptions of different types of epilepsy. In Australia, the goal is to monitor the prevalence and occurrence of epilepsy, gain a better understanding of the causes of epilepsy, evaluate preventive strategies, and help design services for adults with epilepsy. The EAA is a comprehensive research database that is the main epilepsy registration system in Australia. The data elements in this database are securely and confidentially maintained.

Discussion

In a 1998 article entitled “Registry for Epilepsy and Pregnancy,” the North American Epilepsy Society focused on monitoring health in the United States. The article specified that the North American Registry for Epilepsy and Pregnancy (NAREP) was established as a monitoring mechanism for identifying adverse pregnancy outcomes that may be associated with the exposure of the fetus to antiepileptic drugs. The findings showed that promoting pregnancy among women with epilepsy is important to encourage them to make informed decisions. In the United States alone, 800,000 to 1.1 million women of childbearing age have epilepsy, and various factors can lead to congenital abnormalities, including epilepsy. Currently, there is no registry information that allows physicians to confirm the relative safety of antiepileptic drugs during pregnancy. Ultimately, researchers have concluded that a registry can regularly monitor pregnancy outcomes and act as an early warning system to manage negative outcomes associated with antiepileptic drugs.[10]

According to McLachlan’s research, the Canadian Epilepsy Database and Registry (CEDAR) is a comprehensive English-language, multicenter epilepsy database, which has been developed to study the impact of these and other factors on epilepsy in Canada. In addition, it can be used locally in the clinic for office record keeping, automated printouts of a referral letter or graphing seizures, and other data over time. The data in CEDAR are similar to what is found in the patient’s chart. There are 20 participating centers across Canada, which have entered data on over 8000 adult and pediatric epilepsy patients. The information in CEDAR will be available for research purposes to centers entering data and to academic researchers, the pharmaceutical industry, and government agencies.[11]

In 2015, Ajami et al. published an article entitled “National Registry System for Renal Patients in Iran.” The aim of this study was to first identify and compare the characteristics of national renal disease registries in some countries and Iran and second to establish a temporary registry for Iran. This was an applied and descriptive–comparative study. The study population included the National Renal Data Registry (NRDR) in selected countries, where data were collected using forms designed according to the study’s objectives. Data sources for the study included researchers, articles, books, journals, databases, websites, relevant documents, and individuals active in this field, as well as relevant organizations, such as the Ministry of Health, Treatment and Medical Education, and charities supporting patients. The findings showed that most kidney transplant teams report their results as the experience of a single center, and the United States and the United Kingdom have a superior national reference for kidney disease compared with other countries. The results indicated that given the high cost of controlling, preventing, and treating chronic renal diseases and their prominence as leading mortality factors in Iran and around the world, a national registry system for chronic renal diseases can provide better tools and strategies to manage and evaluate patients and risk factors, which ultimately leads to better decision-making.[12]

In 2016, Ajami et al. published an article entitled “The Role of Information Systems in Cerebral Palsy: A Review Study,” which was a review study conducted in Iran. The aim of this study was to identify the role of information systems in managing cerebral palsy and to identify the benefits and barriers to developing a registration system. One of the biggest challenges for children with physical and motor disabilities in rehabilitation centers is access to a system that displays a comprehensive dataset of all patient care information. The study was divided into three phases: collecting, evaluating, and selecting texts. The study was conducted from May 2013 to September 2014. The results showed that the development of a minimum national dataset in long-term care services leads to standardization of data and data content, as well as a common language for data exchange, which ultimately improves the quality and efficiency of health services. In conclusion, data and information management in children with physical and motor disabilities, such as cerebral palsy, facilitates access to data, compares data, and monitors the incidence rate of this disease, which increases the quality of health care.[13]

In 2020, Dreier and colleagues conducted a population-based registry study entitled “Epilepsy after Acquired Brain Injury in Adults” in Sweden. The aim of the study was to describe the risk factors and hazards of epilepsy after hospitalization for acquired brain injury in adults. This was a retrospective cohort study based on national patient registries and comprehensive causes of death. All individuals aged 18 years and older without prior history of epilepsy who were hospitalized due to an acquired brain injury from 2000 to 2010 were included. Patients were followed up until the end of 2017. The findings showed that the 10-year risk of epilepsy was 5.9%, with 1.2% in the control group, 1.7% after tick-borne encephalitis, 4.1% after bacterial meningitis, 20% after herpes simplex virus encephalitis, and 36% after cerebral abscess. Ultimately, the study concluded that epilepsy after various types of acquired brain injury is common in adults. The type and severity of the injury and the tendency to have seizures during the acute phase affect the risk of subsequent epilepsy. Given the significant advances in medical science and technology, having comprehensive and integrated healthcare information in each region and country is essential. Therefore, creating reliable and accurate data elements to improve the quality of information in vital registration centers is necessary. When a national-level registration system is established, it becomes a valuable clinical tool for improving the quality of care and a fundamental prerequisite for implementing electronic health records in each country.[14]

Limitation and recommendation

The only limitation was facing the coronavirus disease 2019 (COVID-19) period, so the majority of the participants in the interview were not able to answer our questions.

Conclusion

Given the prevalence of epilepsy in Iran and the lack of an appropriate information registration system for patients, designing and implementing such a system in healthcare centers can be a significant step toward improving the care of these patients and controlling and preventing epilepsy. It is evident that examining the experiences of other countries that have implemented and used such a system at the national level will help us in designing and developing this system in Iran.

Authors’ contribution

A.Ch. conceptualized the study; curated the data; wrote, reviewed, and edited the manuscript; and wrote the original draft. S.N., H.B., and S.A. conceptualized the study; curated the data; supervised the study; wrote, reviewed, and edited the manuscript; and wrote the original draft.

Ethical approval

This article resulted from Master of Sciences thesis in “Health Information Technology” and research project No. 3991033 and the ethical code IR.MUI.NUREMA.REC.1400.009 that was funded by the Research Vice-Chancellor of Medical Management and Information Sciences Faculty at Isfahan University of Medical Sciences, Iran.

Financial support and sponsorship

This study was funded by the Research Vice-Chancellor (Medical Management and Information Sciences Faculty) at Isfahan University of Medical Sciences, Iran, also was approved by Ethics committee (Ethics code: IR.MU.NUREMA.REC.1400.009).

Conflicts of interest

There are no conflicts of interest.