www.crc.gov.my. 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
Dr Jamaiyah Haniff
Disease & Treatment Registry Unit
CARTA ORGANISASI RANGKAIAN PUSAT PENYELIDIKAN KLINIKAL INSTITUT KESIHATAN KEBANGSAAN (NATIONAL INSTITUTES OF HEALTH) MALAYSIA
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 Sultanah Aminah JB
CRC Hospital Kota Bharu Kelantan
REPORT OUT”DTRU Mission statement
To achieve the objectives of the NTR, the tasks of the TRU are to ensure:
Physical Facilities & Hardware
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
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
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
The data will be printed out
and sent to Expert Panel
Members for verification, review
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. Case definition:
2. Types of reporting
i. Minimal Data set: Common data
ii.Organ Specific form
iii. Annual Census and Centre Survey
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
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