Philippine Journal of Neurology 2018;21(1):20-29

The design and development of a National Registry of Pediatric Neurological Diseases in the Philippines - A preliminary report

Bernadette C. Macrohon ; Jean Marie Ahorro ; Jo Janette R. Dela Calzada ; Ma. Rowena C. Cruda ; Gerardo Luis C. Dimaguila ; Cristina C. Urbi ; Ma. Antonia M. Valencia ; Joan R. Viado

Country

Philippines

Language

English

Abstract

One of the important prerequisites in developing health programs and policies for pediatric neurologic diseases is accurate information about the status of these diseases in the country. At present, there is no existing registry of pediatric neurological diseases in the country. The Child Neurology Society Philippines (CNSP) sought to develop and implement a national registry for pediatric neurologic diseases. Specifically, it aimed to 1.) determine a consensus for the purposes of the registry, 2.) develop an implementation system from data collection until information dissemination, 3.) install a system for evaluating data reliability, and 4.) establish a feedback system for improvement. Results showed that the CNSP members wanted a census of diseases, to use the data for research, to identify participants for a research study, and for epidemiological surveillance. Data collection is by filling up forms at the clinic level and its submission to the centralized encoder. Monthly and annual census of diseases are generated and e-mailed to each member who has subscribed to these reports. Custom reports may be produced when requested. Early challenges in the implementation of the database include negative personal preconceived ideas about the database, collecting data, possible ethical concerns, and logistical limitations.