Neurodevelopmental disorders in LMIC settings - creation of a network and analysis of diagnostic abilities of tools to identify children early.

Many children in low and middle income settings have mental health disorders. A large percentage of these are neurodevelopmental disorders - disorders where the brain has not grown in the right way. This includes disorders such as general developmental delay, autism, behavioural problems and motor difficulties such as cerebral palsy. We think these are more common in low and middle income settings because there are so many more infections, nutritional deficiencies or other injuries which are more likely to occur in these settings. These can occur in the womb, during the period of birth or after birth in the first few years of life. At present we do not exactly know how common these disorders are or what causes them because we have no good tools which can definately say which children have a disorder and which do not. Most tools that are used in high income settings are culturally specific and expensive to use and are not always appropriate for workers at community level in low and middle income settings. Furthermore, up until now there have been very few professionals in many low and middle income settings who can diagnose children with these disorders so that we have been unable to do research on what tools can identify the right children.

In this study we will create the first network of professionals and researchers who are specifically interested in identifying and creating better feasible and valid tools for use in identifying children in the early years with neurodevelopmental disorders. We already have a multicentre study going on with data from a tool created in Malawi which will provide some information on what may work and what doesnt. We will hold two network meetings with researchers and co-investigators from these three sites as well as from our wider network. - one in the UK and one in Uganda. In the first one we will aim to identify already existing tools, cohorts and databases which have information about children who have been definitively diagnosed with a neurodevelopmental disorder. We will also decide on what we need to analyse the data we already have and plan that analysis over the coming months. Our second meeting will feed back the results of this analysis and will provide an opportunity to co-write a more definitive collaborative grant to show the diagnostic utility of a tool which can be used to identify children with neurodevelopmental disorders at an early stage across countries.

Our second aim will be to conduct an analysis of data from a developmental tool - the Malawi Developmental Assessment Tool - which is currently being collected in three sites in children in the community with no know difficulties as well as those who have difficulties. This study will be extended through this grant and will enable a definitive diagnosis to be made on at least 50 additional children in each of three sites in order to enable us to provide more information on the diagnostic utility of the tool across sites. We may be provided with additional databases to utilise during this analysis.

Our third aim will be to conduct a meeting with stakeholders (national networking) 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. This will be fed back at our second networking meeting.

This international network, early data analysis and information on feasibility will allow us to move forward with this work and progress to creating a tool which can identify children with neurodevelopmental disorders better in the early years in order to provide better information on the causes, amount and spectrum of disorders in low and middle income settings.

We estimate that many children in low and middle income (LMIC) settings have neurodevelopmental disorders (NDD) due to a multitude of causes (e.g.infections, nutritional deficiencies, trauma in antenatal, perinatal and postnatal period. At present we have no definitive data due to the lack of tools which can screen and identify children. Most tools used in high income settings are culturally specific, proprietry and require training. With few specialists in LMIC settings we have been unable to do research to provide the evidence. In this study we will create the first network of professionals and researchers who are specifically interested in identifying and creating better feasible, diagnostically acurate, sensitive and specific tools for early identification of NDD. An ongoing funded study (CHAIN NDD - Children with Acute Illness Network Neurodevelopmental Substudy) in Uganda, Malawi and Pakistan provides a network of sites, interest and expertise. Aim 1 will be to hold two network meetings (UK and Uganda). Meeting 1 will aim to identify already existing tools, cohorts and databases with information on children who have been definitively diagnosed with NDD. The group will make a data analysis plan. Meeting 2 will feedback results 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. Aim 2 will be to conduct a diagnostic utility study using GAMLSS statistics to look at performance of Malawi Developmental Assessment Tool (MDAT) Z-scores collected in 600 CHAIN NDD in children with a definitive diagnosis and those with no diagnosis (as provided by an expert neurodevelopmental paediatrician). This grant will enable definitive diagnosis to be made on at 50 additional children to provide this data. Aim 3 will enable a stakeholders meeting in each site to gain information on feasibility and pathways presently available for identifying and referring children.

Benefits: Identifying the diagnostic utility, feasibility, sensitivity and specificity of items within tools which can in the future best identify chidlren with neurodevelopmental disorders is crucial to know if we are going to make the large impacts that we expect in providing evidence of the aetiology and epidemiology of these mental health conditions in children in the early years. Without this information we can not move forward in providing better knowledge on the best preventative and treatment modalities for these disorders. It is clear that the earlier children are identified, the more we can influence and support families and brain development. Through this project we will bring those together who are interested in this area of research and with collaboration and collection of further data, we will be able to answer questions on what works best in identifying children at an early age.

This study contributes to the agenda of the Sustainable Development Goal 3 which calls for the promotion of good health and wellbeing of all. This is particularly the case for highgroups such as women and children. In particular, there is a call for a greater focus on identification of children early to enable preventative interventions. Our study aims to do this. We also aim to concentrate on SDG 10 which seeks to empower and promote the social, economic and political inclusion of women and children with disabilities.

A considerable amount of knowledge will be generated by the project and we are determined to ensure that this makes a difference to the health and wellbeing of children, families and populations through the future implementation of programmes which are effective, provide some quality and are sustainable. Our network will utilise the many international and national collaborations that we have with policy makers in order to make our research evidence fit for purpose. Results will be disseminated at local, national and international meetings as well as through active engagement with our networks at UNICEF, WHO and World Bank and through the academic networks such as the International Developmental Paediatrics Association, we will ensure that research findings are translated to inform policy and practice.

We will arrange a networking workshops in each site to do some focus group work with stakeholders/local policy makers to allow these organisations to benefit from this initial research and to consider how tools created for the international stage may be developed and improved in the future for different local settings. Each site in the study has local engagement opportunities with the public. We will particularly focus this on the Malawi Liverpool Wellcome Trust site where aim to create a small exhibition to be utilised in the foyer of the building with art work from connected projects which will allow for public and school parties to engage with the work. We will work with each University to promote this work and discuss ways of further public dissemination.