|
Name
(Abbreviation) |
Malaysian National Neonatal Registry
(MNNR) |
|
Established since:
|
2003 |
|
Contact person: |
Sr Jennifer Loong Yook Ying, NNR Registry
Manager |
|
Address: |
Malaysian National Neonatal Registry (MNNR)
8th Floor Seminar Room Ward 8B,
Selayang Hospital,
Selayang-Kepong Highway,
68100 Batu Caves,
Selangor. |
|
Phone: |
(603) 6135 2008 |
|
Fax: |
(603) 6135 2008 |
|
Email: |
mnnr@acrm.org.my |
|
URL: |
http://www.acrm.org.my/mnnr |
|
Sponsor, Funding
and Governance: |
|
Sponsor: |
Department of Paediatrics, Selayang
Hospital, Ministry of Health And Perinatal Society of Malaysia |
|
Funding: |
The 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. |
|
Advisory Committee: |
An Advisory Committee is established to
govern the MNNR. The MOH, various professional bodies, and
providers of neonatology related services from all sectors are
represented on this committee to ensure that the MNNR stays
focused on its objectives, and to assure its continuing
relevance and justification.
Dr. Irene Cheah is the current
chairperson of the Advisory Committee. |
|
Objectives: |
The objectives of NNR are to:
-
Determine
the frequency and distribution of critically ill neonates in
Malaysia. These are useful measures of the health burden arising of
neonatal critical illness and its care in the country.
-
To study
the mortality and some morbidity outcomes of babies admitted to NICU
in participating hospitals.
-
To
calculate the perinatal, neonatal and stillbirth mortality rates of
inborn babies.
-
To compare
outcomes between various centres.
-
To develop
indicators for standard of care in various areas eg. Expected
survival rate of infants ventilated for RDS.
-
To study
in further detail outcome of very low birth weight babies.
-
To study
the frequency and distribution of babies with specific congenital
anomalies in the country.
-
Stimulate
and facilitate research on neonatal critical illness and its
management.
|
|
Scope and Content: |
The MNNR is intended to be a truly national
population-based disease registry. It therefore seeks the
participation from all providers of neonatology services in all
sectors (public, NGO and Private) throughout the country.
Participation rate has been consistently high; 24 centres in
2003 and 2004, 27 centres in 2005, 30 centres in 2006, 31
centres in 2007 and currently 32 centres in 2008. |
|
Data collection
and transfer: |
The MNNR presently is still collecting data
using paper-based instruments. Data is collected in the form of
a monthly return to MNNR of all cases encountered in a month.
The MNNR registry office actively tracks data returns and
prompts SDPs to submit data whenever they fall behind schedule
in reporting data.
MNNR plans to use web application, to enable individual SDPs to
securely download data they have submitted to MNNR as well as to
download confidential communication where required. |
|
Record linkage: |
There is a plan to link MNNR’s database to
the Jabatan Pendaftaran Negara’s database to ascertain mortality
outcome. There is also a plan to link the MNNR 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 MNNR has published a pilot study report
in 2003. The 2004 and 2005 annual report was published in 2006
and 2007. Visit
http://www.acrm.org.my/mnnr/publications to download these
reports. |
|
Resources: |
|
Registry operations: |
The day-to-day operations of the MNNR are
undertaken by MNNR’s staff, which comprises a part-time Clinical
Registry Manager, 2 full-time Assistant Registry Manager and 1
full-time Clinical Registry Assistant. They work in an office
based in the Paediatric Department of the Selayang Hospital. |
|
Epidemiology: |
The Clinical Research Centre of the MOH
provides clinical epidemiology expertise for the registry. |
|
Biostatistics: |
This is outsourced to Clinresearch 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: |
15/09/2008 |
