Frequently Asked Questions

1. What is the National Transplant Registry (NTR)?

2. What are the purposes of the NTR?

3. How is the NTR organized?

4. Who reports to the NTR?

5. How can I participate in the NTR?

6. What are the benefits of participating in the NTR?

7. What about confidentiality?

What is the National Transplant Registry?

The National Transplant Registry (NTR) collects information about patients who have had organ or tissue transplantation. The information allows us to estimate the magnitude of transplant activity in the country. Such information is useful for assisting the MOH, Non-Governmental Organizations, private providers and industry in the planning and evaluation of transplant services.

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What are the purposes of the NTR?

The objectives of Transplant register are to:

• Determine the frequency and distribution of transplant activity of all types in Malaysia. These are useful measures of its level of provision in the country

• Determine the outcomes of transplant. Both intermediate outcome measures (such as graft survival, opportunistic infections, adverse drug effects) and final outcome measures (such as mortality and quality of life) will be tracked by the register. This serves the needs of outcome assessment and economic evaluation (pharmacoeconomic analysis).

• Determine the factors influencing outcomes of transplant. Factors of interest include system factors (such as access, organization), clinicians’ characteristics (specialty), and patients’ characteristics (such as age, compliance, comorbidities etc). This identifies opportunities for minimizing variation, and thereby improves quality of care.

• Evaluate transplant services. Criteria for evaluation shall include service accessibility, equity, effectiveness and efficiency. This serves the need of accountability.
  Stimulate and facilitate research on transplant and its management.

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How is the NTR organized?

The NTR is co-sponsored by the following organizations of the Ministry of Health Malaysia:

• National Transplant Committee

• National Transplant Resource Centre

• Transplant Procurement Management Unit

• Medical Development Division

• Clinical Research Centre (CRC)

The CRC has established a Transplant Registry Unit to provide the functional capacity for transplant registration. It maintains the NTR database.

A Governance Board has been established to oversee the operations of the NTR. The MOH, Universities, professional bodies, Non-Governmental Organization and private healthcare providers are represented on this committee to ensure that the NTR stay focus on its objectives, and to assure its continuing relevance and justification.

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Who reports to the NTR?

The NTR receives data on transplantation from 3 main sources:

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

• Information Documentation Unit of the MOH, which operates the Health Management Information system (HMIS)

• And most important of all, the individual doctors who provide transplant services, and voluntarily report data to the NTR. Getting these Source Data Providers (SDP) 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 NTR?

For the NTR to succeed, ideally all health professionals who have anything to do with transplant ought to report to the NTR. Unlike communicable disease, transplant however is not a reportable condition. We urge you to do your bit for our community, and help NTR obtain the information so crucial to promoting the welfare of transplant patients.

To participate, just simply register your centre with the NTR.

Click here to register online

Click here for listing of NTR participants

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What are the benefits of participation?

Apart from doing your bit for our community, here are some other benefits of participating in NTR:

• Invitation to all functions organized by the NTR.

• Acknowledgement in all publications of the NTR.

• Personal copy of all NTR publications free of charge.

• Free listing in the “Directory of Transplant Services in Malaysia”, an annual publication by NTR.

• Free listing in the NTR’s web site.

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

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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 NTR meets this requirement.
The NTR have also developed strict information security policies and procedures to protect data confidentiality in accordance with standard disease registration practice and in compliance with professional standard and applicable regulatory requirements.

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