A pilot study to develop a national cerebral palsy register with surveillance of children for cerebral palsy
G. Khandaker1 4, H. Smithers-Sheedy2 4, J. Islam3, M. Alam3, J. Jung, I. Novak2, R. Booy4 5 , C. Jones1 6, N. Badawi1 2, M. Muhit3 7.
BMC Neurology (2015) 15:173, DOI 10.1186/s12883-015-0427-9
1: The Children’s Hospital at Westmead (Clinical School), Australia; 2: Cerebral Palsy Alliance Research Institute; 3: Child Sight Foundation (CSF), Dhaka, Bangladesh; 4: University of Sydney, Australia; 5: National Centre for Immunisation Research and Surveillance (NCIRS); 6: Marie Bashir Institute, University of Sydney, Australia; 7: University of South Asia, Dhaka, Bangladesh.
Background: The causes and pathogenesis of cerebral palsy (CP) are all poorly understood, particularly in low- and middle-income countries (LMIC). There are gaps in knowledge about CP in Bangladesh, especially in the spheres of epidemiological research, intervention and service utilization. In high-income countries CP registers have made substantial contributions to our understanding of CP. In this paper, we describe a pilot study protocol to develop, implement, and evaluate a CP population register in Bangladesh (i.e., Bangladesh Cerebral Palsy Register – BCPR) to facilitate studies on prevalence, severity, aetiology, associated impairments and risk factors for CP.
Methods/Design: The BCPR will utilise a modified version of the Australian Cerebral Palsy Register (ACPR) on a secured web-based platform hosted by the Cerebral Palsy Alliance Research Institute, Australia. A standard BCPR record form (i.e., data collection form) has been developed in consultation with local and international experts. Using this form, the BPCR will capture information about maternal health, birth history and the nature of disability in all children with CP aged <18 years. The pilot will be conducted in the Shahjadpur sub-district of Sirajgonj district in the northern part of Bangladesh. There are 296 villages in Shahjadpur, a total population of 561,076 (child population ~ 226,114), an estimated 70,998 households and 12,117 live births per annum. Children with CP will be identified by using the community based Key Informants Method (KIM). Data from the completed BPCR record together with details of assessment by a research physician will be entered into an online data repository.
Discussion: Once implemented, BCPR will be, to the best of our knowledge, the first formalised CP register from a LMIC. Establishment of the BCPR will enable estimates of prevalence; facilitate clinical surveillance and promote research to improve the care of individuals with CP in Bangladesh.