2. National Neonatal Registry (NNR)

3. Content Neonatal Registry defined Neonatal Registry defined The National Neonatal Registry (NNR) The National Neonatal Registry (NNR) Objectives of NNR Objectives of NNR Organization of the NCR Organization of the NCR Reporting to the NCR Reporting to the NCR

4. Registration of Sick Newborns Registration of Sick Newborns On going systematic collection, analysis and interpretation of neonatal intensive care data essential to the planning, implementation and evaluation of clinical and public health services for pregnant women and newborns. On going systematic collection, analysis and interpretation of neonatal intensive care data essential to the planning, implementation and evaluation of clinical and public health services for pregnant women and newborns. It is closely integrated with dissemination of these data to those who need to know. It is closely integrated with dissemination of these data to those who need to know.

5. Registration of Sick Newborns The final link in the chain is the application of these data to the management, prevention and control of critical illnesses among neonates The final link in the chain is the application of these data to the management, prevention and control of critical illnesses among neonates A registration system includes a functional capacity for data collection, analysis and dissemination linked to clinical and public health programs. A registration system includes a functional capacity for data collection, analysis and dissemination linked to clinical and public health programs.

6. In Malaysia hospitals are collecting data on neonatal intensive care for purposes of audit and yearly census report. In Malaysia hospitals are collecting data on neonatal intensive care for purposes of audit and yearly census report. Data collected vary between the different hospitals and standardised data is difficult to obtain Data collected vary between the different hospitals and standardised data is difficult to obtain

7. Neonatal Intensive Care in Malaysia Premise Neonatal mortality rate has declined from 14.2 per 1000 LBs in 1980 to 8.5 per 1000 LB s in 1990 and 5.1 per 1000 LBs in 1998 Neonatal mortality rate has declined from 14.2 per 1000 LBs in 1980 to 8.5 per 1000 LB s in 1990 and 5.1 per 1000 LBs in 1998 Part of this improvement can be attributed to better health and antenatal care but a large part is attributed to advances that have been made in neonatal intensive care Part of this improvement can be attributed to better health and antenatal care but a large part is attributed to advances that have been made in neonatal intensive care NICUs are reporting increasing s urvival rates of smaller and more preterm infants NICUs are reporting increasing s urvival rates of smaller and more preterm infants

8. 10 Principal Causes of Deaths in MOH Hospitals 1999 Septicaemia Malignant neoplasms Certain perinatal conditions Diseases of the digestive tract Nephritis, nephrotic, etc Ref : Information & Documentation Unit MOH Figures are % of total deaths of 29,672

9. Objectives of the NNR Determine the frequency and distribution Determine the frequency and distribution of critically ill neonates in Malaysia. These are useful measures of the health burden arising from neonatal critical illnesses and care in the country of critically ill neonates in Malaysia. These are useful measures of the health burden arising from neonatal critical illnesses and care in the country Study the mortality and some morbidity (eg nosocomial infection, retinopathy of prematurity) outcome of babies admitted to NICUs in participating hospitals Study the mortality and some morbidity (eg nosocomial infection, retinopathy of prematurity) outcome of babies admitted to NICUs in participating hospitals

10. Objectives of the NNR To study risks factors associated with adverse outcomes To study risks factors associated with adverse outcomes To develop indicators for standard of care in various areas eg expected survival, rate of infants ventilated for RDS To develop indicators for standard of care in various areas eg expected survival, rate of infants ventilated for RDS Stimulate and facilitate research on neonatal critical illnesses and its management Stimulate and facilitate research on neonatal critical illnesses and its management

11. Organization of the National Neonatal Registry Neonatal Registry Unit (NRU) Sponsors Users Advisory Committee Source Data Producers

12. Sponsors There are two main sponsors : ¶ Ministry of Health and its related organizations and institutions: organizations and institutions: Public Health Division, MOH Public Health Division, MOH The Medical Development Division, MOH The Medical Development Division, MOH Selayang Hospital Selayang Hospital · Perinatal Society of Malaysia through a number of fund-raising through a number of fund-raising activities activities

13. Advisory Committee Governance of the NNR on behalf of sponsors: Set objectives, policies, direction & progress Governance of the NNR on behalf of sponsors: Set objectives, policies, direction & progress Membership of the Committee Membership of the Committee Sponsors’ representatives Sponsors’ representatives Source data producers Source data producers Neonatal Registry Unit (currently CRC) Neonatal Registry Unit (currently CRC) Users ( Public health practitioners, Health care providers, Industry, Decision makers- MOH, Researcher, Press and public) Users ( Public health practitioners, Health care providers, Industry, Decision makers- MOH, Researcher, Press and public)

14. Users of the NNR Individuals or institutions who need the information to assist in planning and implementing perinatal and neonatal services including prevention and control of very low birth weight infants and intensive care management for sick babies. They include Individuals or institutions who need the information to assist in planning and implementing perinatal and neonatal services including prevention and control of very low birth weight infants and intensive care management for sick babies. They include Public health practitioners Public health practitioners Health care providers Health care providers Pharmaceutical, Nutritional and Equipment Industry Pharmaceutical, Nutritional and Equipment Industry Decision makers in Ministry of Health Decision makers in Ministry of Health Research workers Research workers Press and public Press and public

15. Sources of NICU Data in Malaysia The NNR receives data from : 1.Reports by doctors and nurses working in NICUs of participating hospitals Collection of such data will be initiated on admission and completed on discharge on a prescribed clerking registry format (CRF) following a set protocol of data definitions

17. Mortality outcome according to birthweight among centres Percentage mortality

18. Outcome of VLBW infants BW <1000g Outcome as compared to overall rate of 64% Percentage mortality Centre 14 64%

19. We urge you to do your bit for your community, and help NNR obtain the information so crucial to help plan for further development and improvement of neonatal intensive care services ! Support the NNR!

20. Contact Information To register or for more information, please contact: Clinical Research Manager National Neonatal Registry Unit Hospital Selayang Phone: 603-61203233 Ext 8011 Fax: 603-61207564

21. www. perinatal-malaysia.org

22. We make a living by what we get We make a life by what we give