A list of ongoing research projects of AIDD can be viewed here.

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2.6.1 Bangladesh Cerebral Palsy Register (BCPR)

 

Collaborators: CSF Global, Bangladesh, Cerebral Palsy Alliance and University of Sydney, Australia

Phase I: January 2015 – December 2016

Phase II: January 2017 – December 2018 (Ongoing Study)

 

The Bangladesh Cerebral Palsy Register (BCPR) is an ongoing study to develop a national cerebral palsy (CP) register and surveillance system for children with CP. Following completion of the first phase implemented in a rural sub-district from January 2015 to December 2016, the project is currently being scaled up to create the first population based CP register from a low and middle-income country (LMIC). The aim of this study is to develop a platform for national CP register in Bangladesh to facilitate studies on prevalence, severity, aetiology, associated impairments and risk factors for CP in Bangladesh. Children with CP are primarily identified from the community through use of the Key Informant Method (KIM) and added to the register after medical assessment at camps. Information is also collected from multiple sources including: hospitals, rehabilitation centres, other NGOs working with children with CP to contribute to BCPR. CSF Global, Bangladesh, Cerebral Palsy Alliance and University of Sydney, Australia are presently collaborating in this project.

 

Cerebral palsy (CP) is one of the major causes of childhood disability with an estimated global incidence between 2 and 3 per 1000 live births. Although it is estimated that CP is 5 to 10 times more common in underprivileged parts of the world, the exact burden is unknown in most low- and middle-income countries (LMIC). Globally, 85 % of children with disabilities live in developing countries, but less than 5 % receive rehabilitation services. It is hypothesized that the causes of CP in developing countries are different from those in high resource countries, although this has to date not been investigated deeply. Bangladesh is a densely populated country in South Asia with an estimated 2.6 million children living with severe disabilities but only 1500 children in the country have access to education in special schools sponsored by the Government According to a conservative estimate, there are approximately 260,000 children with CP in Bangladesh.

 

There are potential gaps in knowledge of CP in Bangladesh, especially in the spheres of epidemiological research, intervention and service utilization. With little known about CP in Bangladesh, researchers, the government and service providers are limited in their capacity to quantify current and future resource allocation needs or to identify preventive strategies. CP research in developing countries is further compromised by the lack of a representative population sample. Population data are required to reduce potential inaccuracy in research conclusions based on non-representative groups of children with CP (e.g., hospital based research); and for ensuring that strategies developed are applicable to people living with CP in similar settings.

 

In high-income countries, substantial knowledge on the prevalence, risk factors, distribution, frequency, and severity of CP has been explored and defined through CP registries. A ‘CP register’ is a confidential research database which collects information about a population of people with CP. The main aim for CP registers generally is to monitor the incidence and prevalence of cerebral palsy as well as comorbidities, and to gain further understanding about the aetiologies of CP to design and evaluate preventative strategies as well as monitor service delivery trends. CP registers have been established in Europe and Australia for more than 30 years. These registers have generated an enormous amount of original data on the incidence, prevalence, aetiologies and risk factors for CP in high-income countries. Moreover, large scale intervention trials have been conducted using the CP registers as sampling frame. However, until now there were no CP registers established in LMIC. In this project, we are implementing and evaluating a CP population register in Bangladesh following the existing infrastructure of the ACPR (Australian Cerebral Palsy Register). BCPR will work as a platform for a National Cerebral Palsy Register in Bangladesh to facilitate clinical surveillance and promote research to improve the care of individuals with CP and will be a model for other LMIC.

 

The Bangladesh Cerebral Palsy Register (BCPR) project is being developed as a platform for a national CP register in Bangladesh utilizing available infrastructure from the ACPR. BCPR will contribute in identification of opportunities for prevention programs such as better maternal hygiene and immunization programs.  The BCPR study will be a potential model for national CP registers in Bangladesh as well as other low and middle-income countries (LMICs). The initial success of the BCPR has already sparked interest from organizations who are eager to initiate work on CP registers in other developing countries of Asia.

 

This CP register is already being used as a sampling frame for further research such as trial and evaluation of cost-effective intervention strategies for promotion of functional rehabilitation and limiting of secondary or associated impairments. BCPR will be, to the best of our knowledge, the first CP register in a LMIC. It is acknowledged that a national CP register constructed following the BCPR model will have tremendous potential for further research opportunities.

 

Presently existing BCPR infrastructure is being used at AIDD for its research on General Movement Assessment (GMA) for early diagnosis of CP and Cerebral Palsy Quality of Life (CPQoL)  as well as other studies.

 

Web link to publication: https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-015-0427-9

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2.6.2 Health Related Quality of Life of Children with Cerebral Palsy in Rural Bangladesh (Bangladesh CPQoL study)

 

Collaborators: CSF Global, Bangladesh, Cerebral Palsy Alliance Research Foundation, Australia and University of Sydney, Australia

Start Date: April 2016

End Date: July 2017

 

The Bangladesh CPQoL study is the “Health Related Quality of Life of Children with Cerebral Palsy in Rural Bangladesh” study in collaboration with CSF Global, Bangladesh, Cerebral Palsy Alliance Research Foundation, Australia and University of Sydney, Australia. This research will describe the quality of life, in relation to health and wellbeing of adolescents aged 13-18 years old with Cerebral Palsy (CP), information will be collected on the adolescent’s physical, psychological, social, and sexual wellbeing. The well-being of the primary caregiver will also be investigated in relation to anxiety and stress. This information will be used to guide the provision of resources and services for long-term well-being of the population. This research is being conducted using the existing infrastructure of the Bangladesh Cerebral Palsy Register (BCPR) project.

 

Cerebral Palsy (CP) is one of the major causes of childhood disability in Bangladesh with an estimated 240,000 children and adolescents with CP in the country.  However, this could be a gross underestimation considering that other health indicators such as under-five mortality, childhood infections and other conditions leading to childhood disability (including CP) are high in Bangladesh.  Despite the magnitude of this population, little is known about their lives, however, it is well-documented that this population is exposed to numerous determinants that adversely impact their long-term health and well-being. Emerging HRQoL research in low and middle-income countries (LMICs) indicates extremely poor outcomes amongst adolescents with CP.  For example, 67% of adolescents with CP from an Indian study reported moderately to severely impacted HRQoL.  Social isolation, bullying and discrimination, sexual abuse, exclusion from schools and health services, poor pain management, unmanaged co-morbidities such as epilepsy, family stress and factors associated with poverty including hunger can negatively impact HRQoL.  However encouragingly, with the exception of pain, peer relationships and family stress, research from high-income countries has found comparably good outcomes between adolescents with CP and their peers without disability suggesting that many of the factors impacting HRQoL are modifiable and that adolescents with CP can have happy and fulfilled lives.  Moreover, primary caregivers of adolescents with CP commonly suffer from higher rates of anxiety, depression and in general poor social capital.  This can impact the relationship between adolescents and their caregivers and negatively impact on adolescents’ HRQoL.  Understanding the specific factors impacting HRQoL in a highly populated resource poor setting such as Bangladesh is important to ensure that resources and services are targeted effectively and to guide the development of cost-effective programs that enhance long-term wellbeing and enable individuals to live fulfilling self-directed lives as valued members of the community.

 

Enhancement of well-being and socioeconomic participation of people with CP through

comprehensive planning of cross-disciplinary services by better knowledge and understanding

of the factors that affect HRQoL is the impact that this research hopes to have. It will generate

essential data on QoL and psychological well-being to enable development of rehabilitative,

family support and community awareness programs. Socio-cultural factors that impact the

perceived sexual well-being of adolescents with CP will be described to allow social support

and sexuality education programs which address HRQoL determinants to be addressed.

It will also involve establishment of baseline data to monitor changes over time as services

and support for people with disabilities are implemented at the district level in rural settings.

The research will identify the strategies that assist people with CP to develop friendships and

relationships, and the policies required for improvement of QoL for families with members

with disabilities. Focus will be put on greater understanding of the QoL concept and guiding

development of interventions for greater recognition of potential capacities of persons with disabilities in the rural communities of Bangladesh. Additionally, this research will augment the Bangladesh Cerebral Palsy Register (BCPR) project.

 

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2.6.3 Epidemiological Study on Childhood Blindness in Indonesia

 

Collaborators: CSF Global, Bangladesh, Perdhaki, Dria Manunggal, Indonesia

Start Date: January 2016

End Date: Ongoing Study

 

The aim of this ongoing study of severely visually impaired and blind children is to identify the main anatomical site and underlying aetiology of blindness; to identify all preventable and treatable causes (i.e. avoidable causes) and to explore variation by socio-demographic variables. This study will provide epidemiological data on childhood blindness where there is no recent data available, for a large population country where blindness is known to be a major public health problem but no data available on childhood blindness, which is required to plan control strategies.

 

In this study, we are exploring the epidemiology of childhood blindness in two areas of Indonesia, Sumba and Jogjakarta. Sumba is a small impoverished rural island in Indonesia with approximately 0.7 million population. Jogjakarta is a relatively developed city with a population of approximately 3.5 million people.

 

Several means of identification and recruitment of the study participants were adopted; Special Schools: All schools for blind children within the study site were visited and ophthalmic assessment was conducted by a trained ophthalmologist,  Community-based rehabilitation (CBR) programs: all programs and services operating in the study area were visited and all children with severe visual impairment (SVI) and blindness (BL) within such programs were identified and assessed by a trained ophthalmologist,  Key informants (KIs): KIs are community volunteers, including government health workers, NGO staff, teachers, youth volunteers, religious and community leaders, who were trained by the study team on ascertainment of children with SVI/BL in their communities.

 

This study is following an international protocol to study childhood blindness that was developed by WHO and subsequently has been used in many developing countries.  At AIDD, we have first-hand experience of using this protocol in a similar large-scale study on childhood blindness in Bangladesh.  Case ascertainment for this study will be done using the Key Informant Method (KIM).  KIM has been developed and used in epidemiological studies of childhood blindness in Bangladesh, Iran, India, Malawi, China and other developing countries in Asia and Africa.  KIM utilizes and trains local volunteers in case detection of blind children.

 

 

2.6.4 Community-Based Key Informants Method (KIM) Survey of Children with Cerebral Palsy in Rural Sumba Island of Indonesia

 

Collaborators: Karitas General Hospital, Indonesia, and University of Sydney, Australia.

Start Date: May 2016

End Date: Ongoing Study

 

This is an ongoing study at Indonesia, which is one of the most densely populated countries in the world and is the fourth most populous nation, with 27% being children below the age of 15 years. There is no population based epidemiological data on prevalence and causes of childhood disability and cerebral palsy in Indonesia. However, WHO estimates indicate that 1.8% of the Indonesian population "have extreme problems" and 19.5% "have problems" in various aspects of their ability to carry out daily activities.

 

Sumba is a small, very poor rural Island in Indonesia and around 0.7 million population living without any advanced health care services. The Island is divided into East and West Part. East Sumba has a population of 255,717 and contributes to 65.9% of the lowest wealth quintile population in Indonesia. Poor sanitation and vaccination rates result in children being more prone to infectious diseases such as malaria, tuberculosis, Japanese encephalitis and dengue; many of which can lead to childhood disability. There has not been any study conducted in Sumba to define the burden of childhood disability including cerebral palsy (CP) and its aetiology. 

 

A community-based KIM survey is being conducted in East Sumba Island for identification of the prevalence and aetiology of CP; for identification of all preventable and treatable (i.e. avoidable causes) of CP; and for development of a community based rehabilitation program. The study is expected to estimate the prevalence of CP and associated impairments in the study site, define the aetiologies and risk factors of CP for development of appropriate clinical and public health interventions, carry out motor impairment and severity (GMFCS and MACS classification) of CP among children, define their nutritional status, assess their rehabilitation status.

 

The following steps are being implemented during the KIM survey: mapping social networks, networking and sensitization and key informants training, health communication and case finding, medical assessment camps, documentation and monitoring, referral, treatment and community based rehabilitation.

 

The child population in East Sumba Island is estimated at approximately 120,000. This study will use innovative and cost-effective approach, KIM, for case ascertainment in the community. Local NGOs (i.e. Karitas) and church network within the community in Sumba will be used for this purpose.

 

 

2.6.5 Community-Based Management of Epilepsy for Children with CP

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Collaborators: CSF Global, Bangladesh, Cerebral Palsy Alliance and University of Sydney, Australia

Start Date: October 2016

End Date: June 2018 (Ongoing Project)

 

The Community-Based Management of Epilepsy for Children with CP is an ongoing study that involves a number of activities such as conducting camps for assessment and provision of treatment to identify the spectrum of epilepsy and co-existing medical problems, challenges to drug compliance and gaps in knowledge for epilepsy management amongst caregivers. It also includes a training program  for interested health professionals and caregivers on management of epilepsy for children with CP. Additionally, this project involves creating partnerships and linkages with local health facilities for capacity building of local physicians, nurses, health workers, and other personnel.

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2.6.6 General Movement Assessment for Early Diagnosis of Cerebral Palsy among high risk infants in Bangladesh

 

Collaborators: CSF Global, Bangladesh, Cerebral Palsy Alliance and University of Sydney, Australia.

Start Date: January 2017

End Date: June 2018 (Ongoing Study)

 

One of the major causes of childhood disability is Cerebral Palsy (CP) which has an estimated global incidence of 2 – 3 per 1000 live births. The exact burden of CP in most developing nations is not known but it is estimated to be 5 – 10 times more common. It is also estimated that 85% of children with disabilities live in developing countries. Data from the Bangladesh Cerebral Palsy Register (BCPR)  obtained through research done by AIDD has shown that the average age of diagnosis of children with CP in Bangladesh is 5.4 years and almost 70% of the children have never received rehabilitation services of any sort.

 

The first 1000 days (approximately 2 years 9 months) of children with CP is a vital time period where majority brain development takes place and the brain is the most plastic. Inability to carry out early diagnosis of CP in Bangladesh as well as other low and middle-income countries (LMIC) results in inability to access the needed care and services, thus depriving children with CP from the care they need in the vital early stage of life. To timely nurture the developing brain and to rehabilitate them, it is therefore essential to ensure early diagnosis. General Movement Assessment (GMA) is a reliable tool for early diagnosis of CP (median sensitivity of 98% and median specificity of 94%) which has not been previously implemented in LMIC.

 

The GMA study involves screening of births, identification and registration of high-risk infants, collection of their GM recording through mobile-based software, and follow-up activities.

 

GM are a distinct movement pattern that is evident in babies before birth (fetuses from 9 weeks) and after birth (up to 18 weeks post-term). The movement pattern is one which the baby does spontaneously without any external stimulation. Its assessment is based on visual Gestalt perception done by watching a video of the child lying in a natural position, such as on a mat or on the floor.  This is a robust method of predicting CP in infants with high risk of developing neurological dysfunctions. GMApp is an innovative smartphone-based tool for acquiring GM-video-data at community level for remote assessment by experts.  This approach is cost effective and applicable at community level. Hence, it has great potential to revolutionize CP diagnosis and care in LMIC.

 

AIDD and its collaborating partners have trained personnel such as Community Health Workers (CHW) and Key Informants (KI) through necessary capacity building to assist in the GMA process. The study is being carried out through affiliated facilities in order to test the innovative technology for the first time in a LMIC. The assessment tools used in study consists of General Movements Assessment (GMA) carried out by CHWs, Disability Screening Schedule (DSS) for Community Based Screening carried out by parents, and Tools for Detailed Neurodevelopmental Assessment carried out by doctors, psychologists and physiotherapists.

 

The GMA study is expected to develop a cost-effective scalable model for effective early diagnosis of children with CP in low resource settings leading to significant contribution to the existing knowledge base regarding CP in Bangladesh and thereby, facilitate the implementation of best practices. 

 

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2.6.7 Establishment of an Assistive Devices Centre

 

Collaborators: CSF Global, Bangladesh, Cerebral Palsy Alliance, University of Sydney, Wheelchairs for Kids and tna Solutions, Australia

Start Date: January 2017

End Date: December 2018 (Ongoing Project)

 

Our efforts have resulted in the establishment of a facility, installation of various machinery and equipment, and training of personnel for an Assistive Devices Centre in collaboration with CSF Global, Cerebral Palsy Alliance, University of Sydney, Wheelchairs for Kids (WKF) and tna Solutions. The Assistive Devices Centre in Shahjadpur, Sirajganj, Bangladesh is a manufacturing unit is capable of annually producing 500 wheelchairs locally. The facility will be upgraded to produce other assistive devices, therapeutic equipment and items such as AFO/KAFO braces. Local manufacturing of the custom-built wheelchairs will take place at the facility through transfer of technology from WFK. This is in line with commitment towards sustainability as well as creation of opportunities and for adapting changing requirements through further modification and development of the wheelchairs. Through utilization of existing resources and follow-up and feedback mechanisms it is expected that useful new features and upgrades may be incorporated. Components are locally sourced wherever possible and people from the community, specifically household members of children with disabilities are expected to receive training in manufacture, assembly and maintenance of the assistive devices as an income generating activity and a means of economic empowerment.

 

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2.6.8 Outcome of Early Intervention and Rehabilitation Program for Children with CP

 

Collaborators: CSF Global, Bangladesh

Start Date: September 2016

End Date: (ongoing continued study)

 

This is a study initiated for assessment of the outcomes of community-based early intervention and rehabilitation services being provided by the CSF Global “Shishu Shorgo” (a Bengali name that translates to Children’s Heaven in English) Early Intervention and Rehabilitation Centres in Shahjadpur, Sirajganj, Bangladesh. [link to 3.5 Community Based Rehabilitation] The main program offered at the centres is a Transition Program in addition to Saturday Clinic services. The goal of the Transition Program is to increase the child’s participation in their family, school and community.

 

It is expected that this study will yield results on the effectiveness of the programs at the centres, by assessing the extent and degree of integration of the graduates of the program into their family, school, and community. Other aspects of or relating to the centres and its activities will also be part of the investigation, differences and comparisons in outcomes of the different Shishu Shorgo centres will also be investigated. Following the Transition Program, parent satisfaction regarding the intervention and their anxiety and stress levels are also studied. In the community aspect, the sustainability of the program and its acceptability and response from the people of the community are taken into consideration in this study. Another aspect that is analyzed includes comparison between the centre program (for those children who opt to remain enrolled for rehabilitation and therapy there, and those continuing rehabilitation and therapy in the community. The possibility of creating a growth chart is also being explored as part of this investigation. Additionally, this research could result in creation of a surveillance set for monitoring in the future over a longer period of time as part of further investigation. This research extends from the Bangladesh Cerebral Palsy Register (BCPR) project and is being conducted using the existing infrastructure of the project. [link to BCPR study page]

 

The outcomes of this research will allow for results and evidence for planning and provision of rehabilitative care and therapy services to people with disabilities to be presented to planners and policy makers, partners and other organizations.

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2.6.9 Supporting Ultra Poor People with Rehabilitation and Therapy- A Randomized Controlled Trial

 

The findings from the Bangladesh Cerebral Palsy (CP) Register confirm that poverty is a key contributor to delayed diagnosis and poor access to early intervention and rehabilitation services for children with CP in rural Bangladesh. The BCPR study also reported that 97% families of children with CP live below the poverty line in Bangladesh. To achieve the desired change, the intervention has to be tailored considering the needs of the target population. Combining microfinance programs with health interventions has yielded promising results in improving child health in low-resource settings. Therefore, efforts to improve outcomes for children with CP should also include measures to improve family economic/social capital.

 

We are conducting a randomized controlled trial with three parallel arms comparing (i) integrated microfinance/livelihood and community-based rehabilitation (IMBCBR), (ii) community-based rehabilitation (CBR) alone, and (iii) care as usual for ultra-poor families of children with CP in rural Bangladesh. This study will allow us to compare the new integrated intervention (i.e. IMCBR) with CBR alone and no intervention. The duration of the intervention is 12 months and outcomes will be measured at baseline, and at 6, 12 and 18 months. We expect that the IMCBR will improve the health-related quality of life (HRQoL), motor function, communication and nutritional status of children with CP; mental health, HRQoL and social capital of their parents; and socio-economic status and food security of their families.

 

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