1. National Transplant Registry

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

3. Year Transplant started in Malaysia Transplants to date ( 30.12.03) date ( 30.12.03) 60’s–70’s Corneal transplants 1231 1231 19751976 Living related renal Cadaveric renal transplant 847 847 158 158 Total 1005 1005 1987 Bone marrow Adult 262 Paed 372 1995 Living related liver Tx non related liver Tx 42 42 6 1997 Heart transplant 15 15 2000 Arm transplant 1 2002 Cadaveric liver 1

4. Transplantation Centers Renal Renal : Hospital Kuala Lumpur University Malaya Medical Centre Hospital Selayang ? Private centres Heart Heart : National Heart Institute Liver Liver : SJMC Hospital Selayang Hand Hand : Hospital Selayang To date no lung or pancreas transplant So far, no lung, pancreas or cadaveric liver transplants

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

6. 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. 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. 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. A registration system includes a functional capacity for data collection, analysis and dissemination linked to clinical and public health programs.

7. The National Transplant Registry Collects information about patients who had undergone organ or tissue transplantation. Collects information about patients who had undergone organ or tissue transplantation. Longitudinal follow up until occurrence of defined event Longitudinal follow up until occurrence of defined event ( eg.death ), with systematic regular,updated information ( eg.death ), with systematic regular,updated information Allows us to estimate the magnitude of transplant activity in the country. 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. 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.

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

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

10. 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 National Transplant Coordinating Committee, MOH The Medical Development Division, MOH The Medical Development Division, MOH Malaysian Society Of Transplantation. Malaysian Society Of Transplantation. The Clinical Research Centre (CRC) of Kuala Lumpur Hospital 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.

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

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

13. Source Data Producers(SDPs) 1. The individual doctors who provide transplantation services, who voluntarily report data to the NTR. services, who voluntarily report data to the NTR. Data collection will be from six main types of transplantation services: Data collection will be from six main types of transplantation services: Blood And Marrow transplant. Blood And Marrow transplant. Heart and Lung transplant. Heart and Lung transplant. Liver transplant. Liver transplant. Renal transplant. Renal transplant. Corneal transplant. Corneal transplant. Bone/ Tissue Transplant. Bone/ Tissue Transplant.

14. 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. ( 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)

15. 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 Public health practitioner Health provider Health provider Industry Industry Decision maker- MOH Decision maker- MOH Researcher Researcher Press and public Press and public

16. 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. Reporting To NTR

17. Benefits of Participation in NTR Invitation to all functions organized by the NTR. Invitation to all functions organized by the NTR. Acknowledgement in all publications of the NTR. Acknowledgement in all publications of the NTR. Personal copy of all NTR publications free of charge Personal copy of all NTR publications free of charge Free listing in the NTR’s web site. Free listing in the NTR’s web site. Free listing in the ‘Directory of Transplant Services in Malaysia’, an annual publication by NTR. 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. Tap into a network of like-minded people from diverse professional disciplines and backgrounds.

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

19. Contact Information To register or for more information, please contact: Coordinator Transplant Registry Unit Clinical Research Centre Disease And Treatment Registry Unit 2 nd Floor, No 29 & 31, Wisma MEPRO Jalan Ipoh, 51200 Kuala Lumpur Malaysia Malaysia Phone: 603-4045 5948 (Direct line) Fax: 603-4045 1252 Email : ntr@crc.gov.my Website : http://www.crc.gov.my/ntr

20. NATIONAL TRANSPLANT REGISTRY “ Coming Together is the Beginning, Keeping Together is Progress, Working Together is Success.” Henry Ford

21. NTR Website : http://www.crc.gov.my/ntr