National National Transplant Transplant RegistryRegistry

ContentContent Introduction Of Transplantation in MalaysiaIntroduction Of Transplantation in Malaysia Transplant Registry definedTransplant Registry defined The National Transplant Registry (NTR)The National Transplant Registry (NTR) Objectives of NTRObjectives of NTR Organization of the NTROrganization of the NTR Reporting to the NTRReporting to the NTR

YearYear Transplant started in Transplant started in MalaysiaMalaysia

Transplants to Transplants to

date date ( 30.12.03)( 30.12.03)

60’s–70’s60’s–70’s Corneal transplantsCorneal transplants 1231 1231

19751975

19761976

Living related renalLiving related renal

Cadaveric renal transplantCadaveric renal transplant

847847

158158

TotalTotal 10051005

19871987 Bone marrowBone marrow Adult 262 Paed 372Adult 262 Paed 372

19951995 Living related liver TxLiving related liver Tx

non related liver Txnon related liver Tx

4242

66

19971997 Heart transplantHeart transplant 1515

20002000 Arm transplantArm transplant 1 1

20022002 Cadaveric liverCadaveric liver 11

Transplantation Transplantation CentersCentersRenalRenal : : Hospital Kuala LumpurHospital Kuala Lumpur

University Malaya Medical CentreUniversity Malaya Medical Centre Hospital SelayangHospital Selayang ? Private centres? Private centresHeartHeart : : National Heart InstituteNational Heart InstituteLiverLiver : : SJMC SJMC Hospital SelayangHospital Selayang HandHand : : Hospital SelayangHospital Selayang

To date no lung or pancreas transplant To date no lung or pancreas transplant

So far , no lung , pancreas or cadaveric liver transplants So far , no lung , pancreas or cadaveric liver transplants

Tissue Transplant Tissue Transplant CentersCenters

Eye BanksEye Banks : : LIONS HKL Eye BankLIONS HKL Eye Bank

Hussein Onn National Eye HospitalHussein Onn National Eye Hospital

Local hospitalsLocal hospitals

KKM/Universities/ PrivateKKM/Universities/ Private

Bone marrowBone marrow : : UMMC / HKL / PI ( Adults / Paeds )UMMC / HKL / PI ( Adults / Paeds )

HUKM / SJMCHUKM / SJMC

Bone, Skin & AmnionBone, Skin & Amnion: : National Tissue Bank , HUSM National Tissue Bank , HUSM , Kubang Kerian, Kubang Kerian

Bone BankBone Bank : : HKL / UMMC HKL / UMMC

Definition of RegistryDefinition of Registry On going systematic collection, analysis and On going systematic collection, analysis and

interpretation of transplantation data essential to interpretation of transplantation data essential to the planning, implementation and evaluation of the planning, implementation and evaluation of transplantation services in the country.transplantation services in the country.

Closely integrated with dissemination of these Closely integrated with dissemination of these data to those who need to know. data to those who need to know.

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

The National Transplant The National Transplant RegistryRegistry

Collects information about patients who had Collects information about patients who had undergone organ or tissue transplantation.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 Allows us to estimate the magnitude of transplant activity in the country.activity in the country.

Information not only useful to the practitioners of Information not only useful to the practitioners of transplantation but also useful in assisting the MOH, transplantation but also useful in assisting the MOH, NGO, private providers and industry in the planning NGO, private providers and industry in the planning and evaluation of transplantation services.and evaluation of transplantation services.

Objectives of the Objectives of the NTRNTR

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

2.2. Determine the outcomes of transplantation. Determine the outcomes of transplantation.

3.3. Determine the factors influencing outcomes of Determine the factors influencing outcomes of transplantation.transplantation.

4.4. Evaluate transplantation services.Evaluate transplantation services.

5.5. Stimulate and facilitate research on Stimulate and facilitate research on transplantation and its management.transplantation and its management.

Organization of the Organization of the NTRNTR

Sponsor

Governance Board

Transplant Registry Unit

UsersSources Data Producers

( SDP )

SponsorsSponsorsThe NTR is sponsored by the Ministry of Health ( MOH ) The NTR is sponsored by the Ministry of Health ( MOH )

through its various agencies and supported by several through its various agencies and supported by several of its organizations:of its organizations:

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

HospitalHospital

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

It maintains the registry national databases.It maintains the registry national databases.

Ensure effective , efficient and responsive Ensure effective , efficient and responsive operation of NTRoperation of NTR

Provide leadership and direction for the registryProvide leadership and direction for the registry Establish an Advisory Committee or Establish an Advisory Committee or

Governance Board to govern the registry.Governance Board to govern the registry. Provide the financial, human and information Provide the financial, human and information

resources required, if necessary with financial resources required, if necessary with financial contribution from industry or donor agenciescontribution from industry or donor agencies

Responsibilities of Responsibilities of SponsorSponsor

Governance BoardGovernance Board Governance Board oversees the operations of Governance Board oversees the operations of

the NTR. Set objectives, policies, direction & the NTR. Set objectives, policies, direction & progress.progress.

Governance Board members:Governance Board members: MOHMOH UniversitiesUniversities Professional Bodies.Professional Bodies. NGONGO Private healthcare providers.Private healthcare providers.

Source Data Source Data Producers(SDPs)Producers(SDPs)

1. 1. The individual doctors who provide The individual doctors who provide transplantation 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 Data collection will be from six main types of

transplantation services: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.

Source Data Producers Source Data Producers (SDPs)(SDPs)

2. 2. The National Vital Registration system The National Vital Registration system

( Jabatan Pendaftaran Negara ). These ( Jabatan Pendaftaran Negara ). These data are useful for determining or verifying data are useful for determining or verifying mortality outcomes of transplant patients.mortality outcomes of transplant patients.

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

Users of the NTRUsers of the NTRIndividuals or institutions who need the information Individuals or institutions who need the information

to assist in planning and implementing activities to assist in planning and implementing activities related to transplantation and care of the related to transplantation and care of the transplant patients:transplant patients: Public health practitionerPublic health practitioner Health provider   Health provider   IndustryIndustry Decision maker- MOHDecision maker- MOH ResearcherResearcher Press and publicPress and public

For the For the NTRNTR to succeed, ideally all health to succeed, ideally all health professionals who have anything to do with professionals who have anything to do with transplant ought to report to the NTR.transplant ought to report to the NTR.

We urge you to do your part for our community, We urge you to do your part for our community, and help and help NTRNTR obtain information crucial to obtain information crucial to health care development in this country health care development in this country especially in the field of organ and tissue especially in the field of organ and tissue transplantation. transplantation.

Reporting To NTR

Benefits of Participation Benefits of Participation in NTRin 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 Personal copy of all NTR publications free of

chargecharge Free listing in the NTR’s web site.Free listing in the NTR’s web site. Free listing in the ‘Directory of Transplant Free listing in the ‘Directory of Transplant

Services in Malaysia’, an annual publication by Services in Malaysia’, an annual publication by NTR.NTR.

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

ConclusionConclusion A national transplant registry is essential if A national transplant registry is essential if

transplant program is to improve and transplant program is to improve and progress in Malaysiaprogress in Malaysia

The The NTRNTR has a good chance of has a good chance of succeeding with full support from all succeeding with full support from all parties concernedparties concerned

Contact InformationContact InformationTo register or for more information, please contact:To register or for more information, please contact:

Coordinator Coordinator

Transplant Registry UnitTransplant Registry Unit Clinical Research CentreClinical Research Centre

Disease And Treatment Registry UnitDisease And Treatment Registry Unit22ndnd Floor, No 29 & 31, Wisma MEPRO Floor, No 29 & 31, Wisma MEPRO

Jalan Ipoh, 51200 Kuala LumpurJalan Ipoh, 51200 Kuala Lumpur MalaysiaMalaysia

Phone: Phone: 603-4045 5948603-4045 5948 (Direct line) (Direct line)Fax: Fax: 603-4045 1252603-4045 1252

Email : Email : ntr@crc.gov.myntr@crc.gov.myWebsite : Website : http://www.crc.gov.my/ntrhttp://www.crc.gov.my/ntr

NATIONAL TRANSPLANT REGISTRY

“ Coming Together is the Beginning, Keeping Together is Progress, Working Together is Success.”

Henry Ford

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