|
National Transplant Registry (NTR) |
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Name
(Abbreviation) |
National Transplant Registry
(NTR) |
|
Established since:
|
2004 |
|
Contact person: |
Ms. Leong Wei Chee, NTR Registry Manager |
|
Address: |
1st Floor, MMA House
124, Jalan Pahang
50286 Kuala Lumpur
Malaysia |
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Phone: |
(603) 4045 5948 |
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Fax: |
(603) 4044 0613 |
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Email: |
ntr@acrm.org.my |
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URL: |
http://www.mst.org.my/ntrSite/index.htm |
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Sponsor, Funding
and Governance: |
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Sponsor: |
Malaysian Society of Transplantation (MST) |
|
Funding: |
The MST provided grants to fund the NTR
operational activities.
The CRC of the MOH provided technical support in the form of
clinical epidemiology expertise, and biostatistical and ICT
services.
The NTR receives some funding from the medical device and
pharmaceutical industries from time to time, and it also raises
fund through its publication. |
|
Governance Board: |
A Governance Board is established to govern
the NTR. The MST, other professional societies, and providers of
transplant services from the MOH, University and private sectors
are represented on this Board to ensure that the NTR stay focus
on its objectives, and to assure its continuing relevance and
justification.
Tan Sri Dato’ Dr Yahya Awang, Dato’ Dr. Zaki Morad b Mohd Zaher
and Dr Fadhilah Zowyah Lela Yasmin Mansor are the current
(co-)chairpersons of the Board |
|
Objectives: |
The objectives of the NTR are to:
-
Determine
the frequency and distribution of all types of transplantation
activity 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
|
|
Scope
and Content: |
The NTR is intended to be a truly national
population-based registry. It therefore seeks the participation of
all transplant service providers from all sectors (public, NGO and
Private) throughout the country.
The NTR is in fact several registries combined in one. It
currently covers the following:
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Blood and Marrow Transplant
-
Heart and Lung Transplant
-
Liver Transplant
-
Renal Transplant
-
Cornea Transplant
-
Bone and Tissue Transplant
-
Heart Valve Transplant (Homograft)
Participation rate has been consistently
high (146 out of 7 various transplant centers / follow –up centers
in 2004 submitted data to the NTR).
Apart from basic demographic and baseline clinical data, NTR also
collects data on transplant procedures and drug treatments,
complications, and laboratory investigations. Outcomes of interest
include death and graft failure. |
|
Data
collection and transfer: |
The NTR presently employed mixed data
collection methods.
The Renal; Transplant data is largely collected using paper-based
instruments, as this was inherited from the Renal Registry.
The others, being relatively new, were planned and designed to
capture data electronically via the internet from day one.
Please visit
http://www.mst.org.my/ntrSite/index.htm for details on CRFs
used. |
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Record linkage: |
NTR’s database is currently linked to the:
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Reports & Publications: |
The NTR will just be publishing its first
report in 2005
Visit NTR’s website to download this report |
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Resources: |
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Registry operations: |
The day-to-day operations of the NTR are
undertaken by NTR’s staff, which comprises a full-time registry
manager and 1 full-time assistant. They work from a purpose
designed registry office. |
|
Epidemiology: |
The Clinical Research Centre of the MOH
provided clinical epidemiology expertise for the registry |
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Biostatistics: |
This is outsourced to Biostat Consulting
Sdn Bhd |
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ICT support: |
These are outsourced to various IT
companies including NTT (data centre service), MIMOS and KSM
(hardware), Datamed Clinical Computing Sdn Bhd (databases and
applications), SecureTangent (information security), and variety
of specialty software providers (IBM/Ascential, SAS, STATA, WHO/MedDRA,
etc) |
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Date updated: |
24/12/2007 |
