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  • Uploaded on National Transplant Registry Methodology. Dr Jamaiyah Haniff Head, Disease & Treatment Registry Unit. Methodology . Background Components Organisation Operations. Background . Oct 2003…. NTR 1st sponsor meeting …. appointed CRC as designated collaborating unit

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national transplant registry methodology

National Transplant Registry Methodology

Dr Jamaiyah Haniff


Disease & Treatment Registry Unit

  • Background
  • Components
  • Organisation
  • Operations


  • Oct 2003…. NTR 1st sponsor meeting …. appointed CRC as designated collaborating unit
  • 3 rd Nov 2003….. CRC established …. Transplant Registry Unit (TRU) under the Disease & Treatment Registry Unit (DTRU)



Institut Kesihatan Kebangsaan


Institut Kesihatan Umum (IKU)

Institut Penyelidikan Perubatan (IMR)

Institut Pengurusan Kesihatan (IHM)

Rangkaian Pusat Penyelidikan Klinikal (CRC)

Institut Penyelidikan Sistem Kesihatan (IHSR)

Institut Promosi Kesihatan (IHP)

CRC Hospital

Ipoh Perak

CRC Hospital

Pulau Pinang

CRC Hospital Sultanah Aminah JB

CRC Hospital Kota Bharu Kelantan

CRC Hospital

Kuching Sarawak

CRC Hospital

Kuantan Pahang

tru in dtru
  • Renal Registry Unit
  • Cancer Registry Unit
  • Cataract Surgery Registry Unit
  • Neonatal Registry Unit
  • Mental Health Registry Unit
  • HIV/AIDS Treatment Registry Unit
  • Transplant Registry Unit
dtru mission statement



DTRU Mission statement
  • The DTRU aims to serve as the national centre for key diseases and treatment registration in the country by providing a range of services starting “from concept to operations” of these registries and through ensuring high quality standards right “from data to report” which would be used to finally effect patients’ outcomeimprovement programmes.
objectives of the tru in crc
Objectives of the TRU in CRC

To achieve the objectives of the NTR, the tasks of the TRU are to ensure:

  • The complete ascertainment of all new cases of transplant performed by all the SDP
  • The validity of the data collected on these cases of transplant
  • Timely data capturing and analysing and timely reporting

Components of a registry unit






Physical Facilities & Hardware


Work Process


  • Clinical Registry Manager (CRM)
  • Clinical Registry Coordinator (CRC)
  • Clinical Registry Assistant (CRA)
  • Epidemiologist
  • Biostatistician
  • Report editor
  • Desktop publisher
  • Webmaster
  • Clinical Data Manager
  • Database Administrator
  • Programmer
  • Network administrator
  • Security officer
  • Regulatory / Compliance officer

Physical Facilities & Hardware

  • Office space
  • IT infra: Server, VPN , network, workstation, etc
  • Communication infra - direct lines, broad band
  • Archive
  • Security infrastructure


  • Database management
  • Business administration
  • Record linkage
  • Auto encoding
sdp identification enlistment
SDP Identification / Enlistment

If response is not received from the

identified prospective SDP, data manager will

try other means to enlist site.

If response is received from the

Identified prospective SDP,

register the SDP as participant.

Click Exit to Save this SDP record

Click on Add New button to enlist a new SDP.

Identified a new SDP: Department of Pathology, Hospital Ipoh

To add a contact (SDP / Donor / EPM / Sponsor / etc), click on Contacts.

The SDP has been enlisted into the NCR.

Send an ‘Invitation to Participate Letter” to this SDP.

Tick Confirm SDP as ‘Yes’ to register the SDP as participant.

The SDP will appear in SDP Evaluation list

Select the SDP as ‘Yes’ for Prospective SDP

data submission tracking
Data Submission Tracking

Click Exit to save

Type the date data was received

An acknowledgement of data submission letter will appear.

This letter is printed out and sent to the SDP.

The letter will be printed out and sent to the SDP

When the letter is sent, the date will be recorded within the system

Data manager will also review the number of data returns (# of patient records) to date.

Select ‘Yes’ for the month when data is received

At the end of each month, this report will be reviewed by Data Manager to identify the progress of data submission

At the beginning of each month, data manager will identify who are the SDPs that have not submitted their data

Click this to log a monthly submission by SDP

Click on the SDP link and a popup to log monthly data submission will appear

data review and coding
Data Review and Coding

After data has been received from EPM, data will be

entered into the system.

Here, CRC’s medical offier will

verify the codes that has been

autocoded by the system.

They may select one of the following

Options: (1) Verified (2)Recode to another

major site code (3)Uncertain (4)Query data

During de-duplication, patients with duplicate

Records will be identified.

1.      To assure the data quality in the database,

there should be no duplicate of record

For records that were not autocoded

by the system, the reviewer will code

specimen/HPE based on

their judgement

The data will be printed out

and sent to Expert Panel

Members for verification, review

and coding.

In the meantime while

waiting for data to be

reviewed by EPM, data

Manager will resolve queries

arising from patient data.

Upon clicking this button, the system will automatically code the specimen and HPE data to ICD-10 Major site code based on a pre-defined keyword dictionary.

1 sdp identification recruitment and initiation
1) SDP Identification, recruitment and initiation
  • Definition of SDP: Treating physicians or surgeons who manage cases of transplant (organ and tissue)
  • TRU would identify and enlist all SDP
  • TRU would ensure continuous flow of data by continuing motivation:
  • KOL, peer and Professional society
  • Meaningful involvement: Governance Board, Expert panel, NTR supported Transplant Research group
  • Timely feedback and report
  • Marketing: web, NTR events etc
2 data reporting by sdp tracking submission
2) Data reporting by SDP & Tracking submission

1. Case definition:

  • All new cases of transplant (lung, heart, heart and lung, liver, cornea, bone marrow, tissue, bone) performed in current calendar year irrespective of type of facility MOH or non MOH, govt or non-govt, local or abroad irrespective of age or nationality
  • Principle : Liberal: When in doubt, report

2. Types of reporting

i. Minimal Data set: Common data

ii.Organ Specific form

iii. Annual Census and Centre Survey

2 data reporting by sdp tracking submission1

2) Data reporting by SDP & Tracking submission

2) Data reporting by SDP & Tracking submission

3. Frequency of submission

For i and ii minimally monthly submission is requested otherwise if not possible ad hoc reporting.

For iii. Annual at year end

4.Methods of reporting:

-electronic data capture

-paper based

3 data management steps 4 10
3. Data management (steps 4-10)

1. Visual review for error

2. Login into an automated data tracking system (prompt and reminders)

3. Data entry / verification & updates

4. Run edit checks for non-allowed codes, extreme values, inconsistent data etc

5. Data review and coding

6. Search for duplicate records

7. Periodic intensive Active case finding and site monitoring to round up all the unreported cases & late notifications and other Data Query (need for Direct access to source data and SDP cooperation)

8. Database lock

  • The challenge …… commence data collection from 1.1.2004
  • The deliverable …….. 1 st first National Transplant Registry Report by July 2005

Thank you