15
1. Organisation of the Malaysian National Neonatal Registry NNR
1.1 History
In October 2001 at a National Paediatricians’ meeting it was decided that a registry should be set up to study the outcome of sick babies admitted to Neonatal Intensive Care
Units in the country. It was recognised that a minimum data set and a data collection system at a national level are important to monitor mortality and morbidity of infants
admitted to NICUs In collaboration with the Clinical Research Centre CRC, Ministry of Health of Malaysia,
a pilot study was first conducted from 1
st
October to 31
st
December in which 14 centres participated. A report of this study has been published in October 2003. It was concluded
that the NNR is feasible and very useful information can be obtained for purposes of clinical management, resource allocation and policy development. The NNR proper was
then launched on 1
st
January 2004 and 24 Neonatal Intensive Care Units NICUs were recruited.
The Malaysian NNR aims: 1. 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.
2. To study the mortality and some morbidity outcomes of babies admitted to NICU in participating hospitals.
3. To calculate the perinatal, neonatal, and stillbirth mortality rates of inborn babies. 4. To compare outcomes between various centres.
5. To develop indicators for standard of care in various areas e.g. acceptable septicaemic
rates among ill babies in NICUs. 6. To study in further detail outcome of very low birth weight babies.
7. To stimulate and facilitate research on neonatal critical illness and its management. 1.2 Structure
The NNR consisted of an Advisory Committee and administrative staff. The Advisory Committee was made up of senior pediatricians and neonatologists of participating units,
three academic neonatologists from the Universities, a clinical biostatistician and epidemiologist. This committee was to monitor and direct the functions of MNNR and to
approve request of use of data when the necessary. The administrative staff was headed by a Clinical Registry Manager who was assisted by
two registry assistants.
Statistical support was provided by the CRC.
16
1.3 Funding The Ministry of Health of Malaysia provided a research grant for 2 years in 2004 and
Kategori