ABOUT NTR

National Transplant Registry

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

The NTR is co-sponsored by the following organizations of the Ministry of Health Malaysia:
    1.  National Transplant Coordinating Committee, MOH
    2.  Medical Development Division, MOH
    3.  Malaysian Society of Transplantation
    4.  Clinical Research Centre(CRC), HKL, MOH

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 board. The board's role is to ensure that NTR stay focus on its objective and be relevant to the needs of its stakeholders.

More about NTR:

• Purpose of the NTR

• Organization Chart of National Transplant Registry

• Sources of Transplant Data in Malaysia

• Wouldn’t you want to report to the NTR?

• What are the benefits of participating in NTR?

• What about confidentiality?

Purpose of the NTR

The objectives of Transplant Registry are:

• Determine the frequency and distribution of all types of  transplantation activities in Malaysia.

• Determine the outcomes of transplantation.

• Determine the factors influencing outcomes of transplantation.

• Evaluate transplantation services in the country.

• Stimulate and facilitate research on transplantation and its management.

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Organization Chart of National Transplant Registry

Sponsor
The current sponsors of the NTR are:
• National Transplant Coordinating Committee
• Medical Development Division, MOH
• Malaysian Society Of Transplantation
• The Clinical Research Centre, HKL

Sponsors shall:
• Provide leadership and direction for the NTR
• Establish a Governance Board (see below) to govern the NTR. All members of the Governance Board are appointed by sponsors. Membership however should represent all interested parties, which include source data producers, users and representative from the designated collaborating unit.
• The designated collaborating unit shall provide all the financial, human and technical resources required, if necessary with financial contribution from industry or donor agencies.

Governance Board
The Governance Board shall be established by sponsors to oversee the operations of registry. Interested parties including source data producers, TRU and target groups or users are represented on this Board.

Transplant Registry Unit (TRU)
The collection, and analysis of data, and feedback of information are performed in a single centre referred to as the TRU. This unit is staffed by CRM, CRA, epidemiologist, statistician, information technology personnel and other supporting staff. The Clinical Research Centre (CRC) is currently the designated TRU.

Source Data Producers
The NTR receives data on organ/ tissue transplantation from 3 main sources:
1. The individual doctors who provide transplantation services, who voluntarily report data to the NTR. Data collection will be from six main types of transplantation services:
• Blood and marrow Transplant
• Heart and Lung Transplant
• Liver Transplant
• Renal Transplant
• Cornea Transplant
• Bone / Tissue Transplant

2. The National Vital Registration system (Jabatan Pendaftaran Negara). These data are useful for determining or verifying mortality outcomes of transplant patients.
3. Information Documentation Unit of the MOH, which operates the Health Management Information system (HMIS).

Users
These are the individuals or institutions to which the regular registry reports are addressed.
They include
• Transplant professional
• Health care provider
• Public health practitioner
• Industry
• Decision maker
• Researcher
• Press and public
It is their needs for information to assist in planning and managing transplant activities that justify the investment in this registry.

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Sources of Transplant Data in Malaysia

The NTR receives data on transplantation from three main sources:
1. The individual doctors who provide transplantation services, who voluntarily report data to the NTR. The data collected will be systematic and standardized. Data collection will be from six main types of transplantation services:

• Bone Marrow/ Haemotopoeitic Stem Cell

• Transplant

• Heart and Lung Transplant

• Liver Transplant

• Renal Transplant

• Corneal Transplant

• Bone/ Tissue Transplant

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

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

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Wouldn’t you want to report to the NTR?

Click here for listing of NTR participants

      Click here to register online

For the NTR to succeed, ideally all health professionals who have anything to do with transplantation ought to report to the NTR. Unlike communicable diseases, transplantation however is not a reportable condition. We urge you to do your part for our community, and help NTR obtain crucial information for healthcare development in this country especially in the field of organ and tissue transplantation.

What are the benefits of participating in NTR?

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

1. Invitation to all functions organized by the NTR.

2. Acknowledgement in all publications of the NTR.

3. Personal copy of all NTR publications free of charge.

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

5. Free listing in the NTR’s web site.

6. 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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