title: Bangladesh Cerebral Palsy Register (BCPR): a pilot study to develop a national cerebral palsy (CP) register with surveillance of children for CP.
abstract: 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
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: The Children's Hospital at Westmead (Clinical School), The University of Sydney, Locked Bag 4001, Westmead, NSW, 2145, Australia. gulam.khandaker@health.nsw.gov.au.
authors.forename: Gulam
authors.initials: G
authors.lastname: Khandaker
authors.affiliation: Cerebral Palsy Alliance Research Institute, The University of Sydney, Westmead, Australia. HSmithersSheedy@cerebralpalsy.org.au.
authors.forename: Hayley
authors.initials: H
authors.lastname: Smithers-Sheedy
authors.affiliation: Child Sight Foundation (CSF), House 9, Flat A1& B3, Road 2/1, Banani, Dhaka, 1213, Bangladesh. johurul@hotmail.com.
authors.forename: Johurul
authors.initials: J
authors.lastname: Islam
authors.affiliation: Child Sight Foundation (CSF), House 9, Flat A1& B3, Road 2/1, Banani, Dhaka, 1213, Bangladesh. mphysio2002@yahoo.com.
authors.forename: Monzurul
authors.initials: M
authors.lastname: Alam
authors.affiliation: School of Public Health, Sydney Medical School, The University of Sydney, Westmead, Australia. cjun1146@uni.sydney.edu.au.
authors.forename: Jenny
authors.initials: J
authors.lastname: Jung
authors.affiliation: Cerebral Palsy Alliance Research Institute, The University of Sydney, Westmead, Australia. inovak@cerebralpalsy.org.au.
authors.forename: Iona
authors.initials: I
authors.lastname: Novak
authors.affiliation: National Centre for Immunisation Research and Surveillance (NCIRS) and The University of Sydney, Westmead, Australia. robert.booy@health.nsw.gov.au.
authors.forename: Robert
authors.initials: R
authors.lastname: Booy
authors.affiliation: The Children's Hospital at Westmead and the Marie Bashir Institute, University of Sydney, Westmead, Australia. cheryl.jones@health.nsw.gov.au.
authors.forename: Cheryl
authors.initials: C
authors.lastname: Jones
authors.affiliation: Cerebral Palsy Alliance Research Institute and the Children's Hospital at Westmead, Westmead, Australia. nadia.badawi@health.nsw.gov.au.
authors.forename: Nadia
authors.initials: N
authors.lastname: Badawi
authors.affiliation: Child Sight Foundation (CSF) and University of South Asia, House 9, Flat A1& B3, Road 2/1, Banani, Dhaka, 1213, Bangladesh. mmuhit@hotmail.com.
authors.forename: Mohammad
authors.initials: M
authors.lastname: Muhit
mesh_terms: D001459:Bangladesh / Q000453:epidemiology; D002547:Cerebral Palsy / Q000453:epidemiology*; D002648:Child; D002675:Child, Preschool; D006801:Humans; D010865:Pilot Projects; D015995:Prevalence; D012042:Registries / Q000706:statistics & numerical data*; D012307:Risk Factors