Introduction

 

The need for the NORL Registry is relevant in the Ministry of Health (MOH) as aevidence-based data was needed to plan policies and programs for Otorhinolaryngological, Audiological and speech rehabilitation services of the country. According to the World Health Organization (WHO), Ear and Hearing Disorder Survey Protocol; WHO/PBD/PDH/99.8(1), epidemiological data concerning Otorhinolaryngological disease in particular hearing impairment and deafness is sparse and fragmentary world-wide and is especially so in developing countries. An estimated figure of moderate-profound hearing loss is 42 million persons over the age of three years. Sensorineural hearing loss has been reported as the predominant reported type of deafness. In Malaysia National and Hearing Disorder Survey was done in 2005 to look into the magnitude of Hearing Impairment and Ear diseases. In this survey, the prevalence of hearing impairment in the general population was 17.14% with an estimated population of 3,962,879. This is a significant value if we translated it into impact of disease burden as it is a serious disability that can impose a heavy socio-economic burden on individuals, families and population at large. According to the 2005 estimates by the WHO, 278 million people worldwide have moderate to profound hearing impairment whereby at least half of all hearing impairment is preventable. The number of people worldwide with all levels of hearing impairment is rising mainly due to a growing global population and longer life expectancies. The objectives of this registry are to provide a national database reference of causes of ear disorders and hearing impairment as well as cochlear implant program.

 

Objectives

  1. To describe disease burden of hearing impairment and ear disease in Malaysia.
  2. To describe the characteristic of hearing loss, and its aetiology.
  3. To describe variation of cases of hearing loss across different age-groups, ethnicity, gender, socio demographic in Malaysia.
  4. To determine the prevalence of congenital and acquired hearing loss.
  5. To determine the risk factors of hearing loss.
  6. To determine surgical and medical management, rehabilitation measures and outcome including cochlear implantation in Malaysia.
  7. To determine the magnitude and possible causes of late detection of hearing loss.
  8. To evaluate the detection rate and outcome of newborn hearing screening.
  9. To determine the cost burden of hearing loss and cost effectiveness of screening and intervention program.
  10. To stimulate and facilitate research hearing impairment using the database generated.
  11. To formulate plan of action against the challenges of hearing impairment in the population.

Rationale for establishing a National ORL Registry in Malaysia

 

There are currently 30 registries under Clinical Research Centre in Malaysia. The key areas benefiting from establishing a National ORL Registry are as follows:

  • Patient Care And Education
    • Identification of patients with hearing impairment of with regards to aetiology, demographic distribution, treatment, rehabilitation and outcome.
    • Identification of risk factors among patient in hearing impairment.
    • Follow up and tracing of patient hearing loss.
    • Educating patient, family, health care workers and public regarding early detection prevention of hearing loss and treatment measures.
    • Effectiveness of treatment measures and rehabilitation.
  • Education and Linkage
    • Fostering collaboration and create awareness with other authorities related to hearing impairment such as education department, social and welfare department, road transport and occupational safety and health (NIOSH)
    • Focus of audit in terms of outcomes and service delivery according to guidelines set up by expert committees on patient care.
  • Research
    • Provide a more accurate and refined prevalence estimates of hearing impairment in Malaysia eg ethnic variations and risk, geographical variations as well as socio-cultural and socio-economic influence.
    • Provide evidence to help formulate screening and surveillance strategy that are relevant and cost-effective in the Malaysia setting.
    • To emphasize the value of implementing National Universal hearing screening.
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