Bangladesh Cerebral Palsy Register (BCPR): a pilot study to develop a national cerebral palsy (CP) register with surveillance of children for CP

Abstract

BackgroundThe 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/DesignThe 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.DiscussionOnce 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.

Mortality in children with cerebral palsy in rural Bangladesh: a population‐based surveillance study

“…Children with confirmed CP were registered into the BCPR following the definition of CP used in the Surveillance of CP in Europe and Australian CP Register . The definition includes five key elements: ‘Cerebral Palsy: (1) is an umbrella term for a group of disorders; (2) is a condition that is permanent but not unchanging; (3) involves a disorder of movement and/or posture and of motor function; (4) is due to a non‐progressive interference, lesion, or abnormality; and (5) the interference, lesion, or abnormality originates in the immature brain’ …”

“…epilepsy, intellectual, visual, hearing, and speech) were also recorded as part of the BCPR registration based on detailed clinical history, available medical records, and clinical assessment by the medical assessment team. The working definitions of the associated impairments have been discussed previously …”

Risk factors for dental caries among children with cerebral palsy in a low‐resource setting

“…4 The details of the study population and recruitment strategies have been described previously. BCPR is one of the first population-based CP registers in a LMIC setting and has been operating since January 2015.…”

“…4,12 To conduct the oral examination, the dentist used a 250-lumen LED lightbulb coupled to the head, flat dental mirrors, What this paper adds • Children with cerebral palsy with severe motor disability (Gross Motor Function Classification System levels IV-V) are at high risk for dental caries. Two general dentists (RA and RR) participated in the theoretical stage where the diagnostic criteria for dental caries (dmft/DMFT) and periodontal health (Community Periodontal Index, CPI) were discussed 15 and the examining dentist (RR) was trained to carry out the oral health assessment.…”

“…4,5 These can include changes in structure of the orofacial region, feeding problems, and difficulties in maintaining oral hygiene; additionally people with CP can encounter barriers in accessing oral health care. 4,5 These can include changes in structure of the orofacial region, feeding problems, and difficulties in maintaining oral hygiene; additionally people with CP can encounter barriers in accessing oral health care.…”