The first collaborative meeting for the INDIGO study was held in Liverpool on the 18th-20th April 2018.
Professionals from Malawi, Uganda, Zimbabwe, India, Pakistan, Kenya, South Africa, UK and Canada all attended to discuss the present situation with screening and assessment of children with disabilities from 0-3 years in low and middle income settings.
A working meeting was held looking at the definitions of neurodevelopmental delay and neurodisability, gold standard assessments, screening and surveillance. The tools used presently, both those available for neonates and those for slightly older children, were reviewed, as well as specific tools for ASD versus more general screening tools. The pros and cons of these tools were identified and discussed.
The statistical team conducted a review of methodology for providing evidence for diagnostic efficacy and for screening particularly pertinent to developmental tools used in low and middle income settings.
The meeting has also enabled us to create a preliminary plan for identifying extra items that may have utility for screening, which are not presently within the MDAT and to create a matrix for doing this.
The groups made plans for recruitment and piloting of a tool in the three countries enabling us to write a clear protocol for ethics within the three countries. This will include a piece of qualitative work to understand what practices are presently going on for screening and surveillance of children with disabilities in the first 3 years in the three settings for our study.
A selection of the presentations from meetings are available to view below.