The INDIGO Study
Exploring the diagnostic utility of items on developmental tools in Uganda, Malawi and Pakistan for screening for neurodevelopmental disorders.
In the INDIGO network, we have created the first network of professionals and researchers who are specifically interested in identifying and creating better feasible, diagnostically accurate, sensitive and specific tools for early identification of NDD in LMIC settings.
More specifically, there are three aims for the study:
- The first aim will involve two networking meetings, one in the UK and the second in Uganda. The first meeting will aim to identify existing tools, cohorts and make some decisions about how to conduct a diagnostic utility study. In particular, this will focus on defining NDD and gaining consensus on a Gold Standard approach to diagnosis. The second meeting will feedback results from our review and provide an opportunity to co-write a collaborative grant to demonstrate diagnostic utility of a tool to identify children with NDD at 0-3 years.
- Our second aim is to conduct a pilot diagnostic utility study in order to identify the performance of the MDAT items. This will also include additional items found from tools screening for children with disabilties identified through consensus (the MDAT +) using a case-control approach in three countries (Pakistan, Malawi and Uganda) with cohorts of normal children, children at risk and children with disabilities. All children reviewed will have a Gold Standard assessment by a neurodevelopmental paediatrician. A video of this assessment will then be reviewed by a second neurodevelopmental paediatrician. We will use a GAMLSS approach to identify the differences in behaviour of the items on the tools with these different cohorts of children.
- Finally, our third aim will be to conduct some qualitative work that will include focus groups and stakeholders meetings in order to gain information on what types of pathways there are at present for identifying and referring children and what stakeholders in each setting feel would be most helpful and feasible for the future.
Children undergoing assessment at Disability clinic in Blantyre, Malawi