|
Name
(Abbreviation) |
National Cancer Registry
(NCR) |
|
Established since:
|
2002 |
|
Contact person: |
Sister Tom Asiah, NCR Registry Manager |
|
Address: |
2nd Floor, MMA House
124, Jalan Pahang
50286 Kuala Lumpur
Malaysia |
|
Phone: |
603-40455928 |
|
Fax: |
603-40451252 |
|
Email: |
ncr@acrm.org.my |
|
Sponsor, Funding
and Governance: |
|
Sponsor: |
Department of Radiotherapy & Oncology,
Kuala Lumpur Hospital, Ministry of Health (MOH) |
|
Funding: |
MOH is the sponsor of the registry.
The CRC of the MOH provides technical support in the form of
clinical epidemiology expertise, and biostatistical and ICT
services.
The NCR receives some funding from the medical device and
pharmaceutical industries from time to time, and it also raises
funds through its publication |
|
Advisory Committee: |
An Advisory Committee is established to
govern the NCR. The Ministry of Health, various professional
bodies, Non-Governmental Organisations including National Cancer
Council (MAKNA) and providers of cancer related services
(Radiotherapy and Oncology, Haematology, Paediatric Oncology,
Pathology, Palliative care, and others) from all sectors are
represented on this committee to ensure that the NCR stays
focused on its objectives, and to assure its continuing
relevance and justification.
Dr. Gerard Lim Chin Chye and Dr. Halimah Yahaya are the current
co-chairpersons of the Advisory Committee. |
|
Objectives: |
The objectives of NCR are to:
-
Determine
the disease burden attributable to cancer by quantifying the
magnitude of cancer morbidity and mortality, and its geographic and
temporal trends in Malaysia.
-
Identify
subgroups in the population at high risk of cancer to whom cancer
prevention effort should be targeted.
-
Identify
potential risk factors involved in cancer.
-
Evaluate
cancer treatment, control and prevention programmes.
-
Stimulate
and facilitate epidemiological research on cancer, eg generating
hypotheses on cancer aetiology
|
|
Scope and Content: |
The NCR is intended to be a truly national
population-based disease registry. It therefore seeks the
participation from all providers of cancer related services such
as Oncology, Radiotherapy, Pathology, Palliative care,
Radiology, selected surgical and medical disciplines in all
sectors (public, NGO and Private) throughout the country.
Participation rate has been consistently high (There were 174
data providers that submitted data to the NCR in 2003 and 191
data providers in 2004).
Given the large number of cancer
notifications each year, to minimize the burden to source data
providers (SDPs) as well as to ensure completeness of case
ascertainment which has overriding priority, the NCR collects
only minimal data for each notified case. These are Patient’s
name, IC, age, sex, ethnicity, cancer site or primary organ or
biopsy specimen, and cancer histopathology if known. |
|
Data collection
and transfer: |
The NCR presently is still collecting data
using paper-based instruments. Data is collected in the form of
a monthly return to NCR of all cases encountered in a month. The
NCR registry office actively tracks data returns and prompts
SDPs to submit data whenever they fall behind schedule in
reporting data.
NCR has introduced a web application, called eCancer, to enable
individual SDPs to securely download data they have submitted to
NCR as well as to download confidential communication where
required.
Given the trend, NCR will no doubt employ electronic data
capture (EDC) via the internet in the near future for purpose of
cancer notification. |
|
Record linkage: |
There is a plan for NCR’s database to be
linked to the Jabatan Pendaftaran Negara’s database to ascertain
mortality outcome.
There is also a plan to link the NRR to the National Operative
Procedure register and the MOH’s Health Management Information
System (HMIS) to determine morbidity events when these two
databases are properly established. |
|
Reports & Publications: |
The NCR has been publishing an annual
statistical report since 2003 (the Third Report will be due in
early 2006).
Several research projects based in part on cancer registry data
are ongoing.
Visit NCR’s website to download these reports |
|
Resources: |
|
Registry operations: |
The day-to-day operations of the NCR are
undertaken by NCR’s staff, which comprises a full-time registry
manager and 2 full-time assistants. They work from a purpose
designed registry office. |
|
Epidemiology: |
The Clinical Research Centre of the MOH
provides clinical epidemiology expertise for the registry. |
|
Biostatistics: |
This is outsourced to Biostat Consulting
Sdn Bhd. |
|
ICT support: |
These are outsourced to various IT
companies including NTT (data centre service), MIMOS and KSM
(hardware), Datamed Clinical Computing Sdn Bhd (databases and
applications), SecureTangent (information security), and variety
of specialty software providers (IBM/Ascential, SAS, STATA, WHO/MedDRA,
etc) |
|
Date
updated: |
12/01/2006 |
