Name (Abbreviation)

Malaysian National Neonatal Registry  (MNNR)

Established since:

2003

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 MNNR 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 www.acrm.org.my/mnnr 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:

09/09/2008