The design and development of a National Registry of Pediatric Neurological Diseases in the Philippines - A preliminary report
- Author:
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
- Publication Type:Journal Article
- From:
Philippine Journal of Neurology
2018;21(1):20-29
- CountryPhilippines
- 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.
- Full text:2024080713161244021PJN 2.pdf
