KBB
Transdiagnostic Associations across Developmental Disorders
Transdiagnostic Associations across Developmental Disorders
The KBB study focuses on understanding developmental disabilities among children and adolescents in rural settings of sub-Saharan Africa.
The study will characterize developmental, behavioral, neurophysiological, health and genetic profiles to improve understanding of developmental disorders and support better identification of children who may need appropriate services.
Elena Grigorenko
Principal Investigator
Phillimon Ndubani
Local Principal Investigator
Ackim Mungo
Local Study Coordinator
Children and Their Siblings
The study aims to recruit approximately 2,000 children with developmental disabilities(probands) and approximately 2,000 siblings without developmental disabilities from the same biological mother and father.
Participants will be between 3 and 18 years of age. Recruitment is planned over a four-year period, with an approximate target of 500 probands and 500 siblings recruited each year.
What the Study Aims to Achieve
The study has three main objectives focused on identifying children with developmental disabilities, understanding their developmental profiles, and examining the support and services available to them.
Identify and Recruit Participants
Identify and recruit children primarily through household surveys, while also using other appropriate approaches such as health facilities and local health centres.
Characterize Developmental Profiles
Characterize and profile developmental milestones and individual characteristics using behavioral, neurophysiological, health-record and genetic information.
These profiles will help explore options for differential diagnosis of developmental disabilities in rural settings of sub-Saharan Africa.
Understand Support and Services
Characterize the support and services received by children and young people with developmental disabilities through their homes, schools, communities and national organizations.
Comprehensive Participant Assessments
The study uses a range of assessments to better understand the development, abilities, health and biological characteristics of participating children.
Academic Assessments
Children will participate in academic assessments including ZAT Maths and ZAT RR.
Physical Assessments
Assessments will include physical measures such as hearing, weight and vision.
Neurophysiological Assessments
The study will use EEG/ERP and fNIRS to investigate neurophysiological characteristics.
Genetic Assessment
Saliva samples will be collected from the proband with a developmental disability and the sibling without a developmental disability for DNA analysis.
Parent and Caregiver Questionnaires
Parents or caregivers will complete questionnaires about the child's development and home environment. This information will help the research team understand developmental experiences and the broader context in which children grow and learn.
Understanding Community Perspectives
The study will engage community stakeholders through focus group discussions. These may include community leaders such as headmen, church leaders, head teachers and health facility personnel.
Discussions will explore community perceptions of disability and the availability and accessibility of services for children with developmental disabilities.
Potential Benefits to Families
Participation in the study may provide families with useful information about their children's developmental characteristics and abilities, together with guidance on services that may be relevant to their needs.
Better Understanding
Families may learn more about their child's disability, including its characteristics and possible causes, based on the information available from the study assessments.
Information and Service Guidance
Families may learn more about their child's strengths and areas of difficulty and may be advised about where relevant services may be accessed.
Supporting Better Understanding of Developmental Disabilities
By combining behavioral, educational, neurophysiological, health and genetic information with community perspectives, the study seeks to strengthen understanding of developmental disabilities in rural settings of sub-Saharan Africa.
The findings may help inform approaches for identifying developmental disabilities and understanding the support and services available to affected children and their families.
Ethical and Responsible Research
Research involving children and families requires appropriate ethical oversight and protection of participants. Study activities should be conducted in accordance with approved research protocols, informed consent and assent requirements, confidentiality procedures and applicable research regulations.
Research Ethics & TrainingResearch Through Collaboration
The KBB study brings together research expertise and local collaboration to better understand developmental disabilities and the needs of children and families in rural communities.
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