National%20Transplant%20Registry

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National Transplant Registry
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Content

• Introduction Of Transplantation in Malaysia
• Transplant Registry defined
• The National Transplant Registry (NTR)
• Objectives of NTR
• Organization of the NTR
• Reporting to the NTR

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Year Transplant started in Malaysia Transplants to date ( 30.12.03)
60s70s Corneal transplants 1231
1975 1976 Living related renal Cadaveric renal transplant 847 158
1975 1976 Total 1005
1987 Bone marrow Adult 262 Paed 372
1995 Living related liver Tx non related liver Tx 42 6
1997 Heart transplant 15
2000 Arm transplant 1
2002 Cadaveric liver 1
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Transplantation Centers

• Renal Hospital Kuala Lumpur
• University Malaya Medical Centre
• Hospital Selayang
• ? Private centres
• Heart National Heart Institute
• Liver SJMC
• Hospital Selayang
• Hand Hospital Selayang
• To date no lung or pancreas transplant

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Tissue Transplant Centers

• Eye Banks LIONS HKL Eye Bank
• Hussein Onn National Eye
  Hospital
• Local hospitals
• KKM/Universities/ Private
• Bone marrow UMMC / HKL / PI ( Adults / Paeds )
• HUKM / SJMC
• Bone, Skin Amnion National Tissue Bank , HUSM
  , Kubang Kerian
• Bone Bank HKL / UMMC

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Definition of Registry

• On going systematic collection, analysis and
  interpretation of transplantation data essential
  to the planning, implementation and evaluation of
  transplantation services in the country.
• Closely integrated with dissemination of these
  data to those who need to know.
• A registration system includes a functional
  capacity for data collection, analysis and
  dissemination linked to clinical and public
  health programs.

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The National Transplant Registry

• Collects information about patients who had
  undergone organ or tissue transplantation.
• Longitudinal follow up until occurrence of
  defined event
• ( eg.death ), with systematic regular ,updated
  information
• Allows us to estimate the magnitude of
  transplant activity in the country.
• Information not only useful to the practitioners
  of transplantation but also useful in assisting
  the MOH, NGO, private providers and industry in
  the planning and evaluation of transplantation
  services.

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Objectives of the NTR

1. Determine the frequency and distribution of all
   types of transplantation activities in Malaysia.
2. Determine the outcomes of transplantation.
3. Determine the factors influencing outcomes of
   transplantation.
4. Evaluate transplantation services.
5. Stimulate and facilitate research on
   transplantation and its management.

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Organization of the NTR
Sponsor
Governance Board
Transplant Registry Unit
Sources Data Producers ( SDP )
Users
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Sponsors

• The NTR is sponsored by the Ministry of Health (
  MOH ) through its various agencies and supported
  by several of its organizations
• National Transplant Coordinating Committee, MOH
• The Medical Development Division, MOH
• Malaysian Society Of Transplantation.
• The Clinical Research Centre (CRC) of Kuala
  Lumpur Hospital
• The CRC has established a Transplant Registry
  Unit
• to provide the functional capacity for transplant
  registration. It maintains the registry national
  databases.

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Responsibilities of Sponsor

• Ensure effective , efficient and responsive
  operation of NTR
• Provide leadership and direction for the registry
• Establish an Advisory Committee or Governance
  Board to govern the registry.
• Provide the financial, human and information
  resources required, if necessary with financial
  contribution from industry or donor agencies

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Governance Board

• Governance Board oversees the operations of the
  NTR. Set objectives, policies, direction
  progress.
• Governance Board members
• MOH
• Universities
• Professional Bodies.
• NGO
• Private healthcare providers.

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Source Data Producers(SDPs)

• 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.
• Corneal transplant.
• Bone/ Tissue Transplant.

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Source Data Producers (SDPs)

• 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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Users of the NTR

• Individuals or institutions who need the
  information to assist in planning and
  implementing activities related to
  transplantation and care of the transplant
  patients
• Public health practitioner
• Health provider  
• Industry
• Decision maker- MOH
• Researcher
• Press and public

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Reporting To NTR

• For the NTR to succeed, ideally all health
  professionals who have anything to do with
  transplant ought to report to the NTR.
• We urge you to do your part for our community,
  and help NTR obtain information crucial to health
  care development in this country especially in
  the field of organ and tissue transplantation.

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Benefits of Participation 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 NTRs web site.
• Free listing in the Directory of Transplant
  Services in Malaysia, an annual publication by
  NTR.
• Tap into a network of like-minded people from
  diverse professional disciplines and backgrounds.

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Conclusion

• A national transplant registry is essential if
  transplant program is to improve and progress in
  Malaysia
• The NTR has a good chance of succeeding with full
  support from all parties concerned

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Contact Information

• To register or for more information, please
  contact
• Coordinator
• Transplant Registry Unit
• Clinical Research Centre
• Disease And Treatment Registry Unit
• 2nd Floor, No 29 31, Wisma MEPRO
• Jalan Ipoh, 51200 Kuala Lumpur
• Malaysia
• Phone [phone] (Direct line)
• Fax [phone]
• Email ntr_at_crc.gov.my
• Website http//www.crc.gov.my/ntr

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NATIONAL TRANSPLANT REGISTRY
Coming Together is the Beginning,
Keeping Together is Progress,
Working Together is Success.
Henry Ford
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• NTR Website http//www.crc.gov.my/ntr

Thank you