Frequently Asked Questions

1. What is a disease registry?

2. What is the National Cataract Surgery Registry?

3. Why National Cataract Surgery Registry (NCSR)?

4. What are the purpose of the NCSR?

5. Who should participate in the NCSR?

6. How is the NCSR organized?

7. Who reports to the NCSR?

8. How can I participate in the NCSR?

9. What are the benefits of participating in the NCSR?

10. What about confidentiality?

What is a disease registry?

Disease Registry or surveillance is defined as an ongoing, systematic collection, analysis and interpretation of disease specific data, and timely dissemination of these consolidated and processed information essential to the planning, implementation and evaluation of clinical and public health practice, to contributors to the surveillance and other interested persons.

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What is NCSR?

The National Cataract Surgery Registry (NCSR), a Ministry of Health (MOH) supported service, collects information about cataract surgeries in Malaysia. The information is needed for the estimation of cataract surgery treatment rates, and to evaluate its outcomes in the country. Such information is useful for assisting the MOH, Non-Governmental Organizations, private providers and industry in program planning and evaluation, leading to cataract prevention and control.

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Why National Cataract Surgery Registry (NCSR)?

• Cataract is a significant cause of visual impairment - backlog of cataract patients - 220,000 people visually impaired, among these, 20,000 were blind (NES-1996).

• Limited information on country cataract surgical services - national annual census - only the number of cataract surgery performed.

• Unknown information on cataract surgical services in Malaysia

  1. Patient profiling (demography) who come for cataract surgery services.

  2. Quality of Service - waiting time for surgery, type of admission and type of cataract surgery, adverse events during and after surgery, surgical outcomes (either visual acuity or visual functioning and quality of life outcomes) and factors influencing its outcome.

  3. Do not have reliable cataract surgical rates (CSR) - CSR is important in reflecting the overall eye care delivery in the country.

This information is required for planning the provision of cataract surgery services as well as providing the basis for improvement of the services, particularly towards high volume, high quality and low cost cataract surgery.

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What is the purpose of NCSR?

The objectives of National Cataract Surgery Register are to:

1. Determine the frequency and distribution of cataract surgery in Malaysia. These are useful measures of the health burden arising from cataract and its treatment provision in the country.

2. Determine the outcomes, and factors influencing outcomes of cataract surgery. This serves the needs of outcomes assessment.

3. Evaluate cataract surgery services. This serves the need of accountability.

4. Stimulate and facilitate research on cataract and its management. (e.g. visual functioning outcome, assess needs for pre-op investigation among fit patients, risk factors for posterior subcapsular opacification)

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Who should participate in the NCSR?

1. Source data producers: All health professionals who perform cataract surgery are invited. This will include MOH hospitals, Ministry of Defense Hospitals, Universities and private hospitals as well.

Which patients?

2. All patients, regardless of age, who undergo cataract surgery, including combined cataract surgery. Exclude patients who need to have lens removal, decided ("on the table”) by surgeons while performing the other surgeries, usually during VR surgery.
    

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How is NCSR organized?

The NCSR is co-sponsored by the:

• Ophthalmology Service, MOH

• The Clinical Research Centre (CRC) of the MOH

An Advisory Committee has been established on 4/01/2002 to oversee the operations of the NCSR. The MOH, Universities, professional bodies, Non-Governmental Organization and private healthcare providers are represented on this committee to ensure that the NCSR stay focus on its objectives, and to assure its continuing relevance and justification.

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Who reports to the NCSR?

The NCSR receives data on cataract surgery from 2 main sources:

• The National Vital Registration system (Jabatan Pendaftaran Negara). These data are useful for determining or verifying mortality outcomes of patients after cataract surgery.

• And most important of all, the individual doctors who provide cataract surgery services, and voluntarily report data to the NCSR. Getting these source data producers (SDPs) to collect and report the required data are the most critical and yet difficult element of the system. It has to be systematic and uniform, and the staff of SDPs need to be trained and constantly motivated to ensure high data quality.

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How can I participate in the NCSR?

For the NCSR to succeed, ideally all health professionals who perform cataract surgery ought to report to the NCSR. Unlike communicable disease, cataract and its treatment, cataract surgery however is not reportable. We urge you to do your bit for our community, and help NCSR obtain the information so crucial to promoting the welfare of patients who will need and have had cataract surgery performed.

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What are the benefits of participating in NCSR?

• As an individual cataract surgeon , you can assess your cataract surgical outcome more accurately and compare yourself to the national standard. You will also be able to look at the trend of your surgical outcome over the years and audit your own performance.

• As a head of a department/institution, you can use the cataract outcome data as a basis for quality assurance of cataract surgery at your department/institution. You can also use the NCSR data to audit your trainees’ performance to promote quality improvement in cataract surgery.

• For all ophthalmologists (participants or non-participants), you will be able to see the trends and to chart evaluation of cataract surgery services (both in technology, for e.g. types of IOL, phacoemulsification machine, and surgical techniques).

Apart from the above, here are some other benefits to participating in NCSR::

• Invitation to all functions organized by the NCSR

• Acknowledgement in all publications of the NCSR

• Personal copy of all NCSR publications free of charge

• Free listing in the NCSR's website

• Tap into a network of like-minded people from diverse professional disciplines and backgrounds

For the NCSR to succeed, ideally all health professionals who perform cataract surgery ought to report to the NCSR. Unlike communicable disease, cataract and its treatment, cataract surgery however is not reportable. We urge you to do your bit for our community, and help NCSR obtain the information so crucial to promoting the welfare of patients who will need and have had cataract surgery performed.

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What about confidentiality?

Current legislation allows doctors to release their patients’ data to persons demonstrating a need, which is essential to public health and safety. The NCSR meets this requirement.
The NCSR have also developed strict policies and procedures to maintain confidentiality in disclosure of data.

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