Developing responsible neurotechnology for infants and children with neurodevelopmental conditions

Approximately 1 in 10 children in the UK has a neurodevelopmental condition (including Autism Spectrum Disorder, ADHD, Intellectual Disability and specific learning and motor disabilities). Neurodevelopmental conditions often have a life-long impact on the person's (and their family's) quality of life. This includes on average lower education, greater unemployment, lack of independence, susceptibility to violence, and high rates of mental health problems. On the whole, there are few therapies available that are effective. Key factors are late diagnosis, after critical periods of brain growth are completed, and substantial differences between individuals with the same umbrella diagnosis in terms of clinical features and underlying biology, meaning that "one size does not fit all". Precision medicine aims to transform healthcare by tailoring therapies to individual brain profiles. It is based on the assumption that diagnosis can be improved if it is based on the underlying cause or mechanisms rather than merely symptoms and that atypicalities in brain development may precede some overt behavioural differences. However, applying precision medicine to young children with neurodevelopmental conditions depends on having accurate and reliable ways of measuring brain activity and behaviour. For example, to aid early identification of children with difficulties, we need ways of measuring brain activity in the home or nursery. To identify the best ways to help children, and when they need to be offered, we need tools that can adjust brain measurements as they are taken. These tools must be for all children, including those with severe intellectual or motor disability, so we need tools that measure brain activity during tasks with low motor or attentional demands, such as eye-tracking or touchscreen devices.
Despite significant advances in the development of new technologies for measuring brain function in infants and young children, few instruments are used in the clinic. One challenge is making sure that such technologies are designed to permit consistent application, so readings can be reliably compared across time and across children. We also need superior computational methods for turning large amounts of multidimensional data into clinically useful information about an individual child. Hence, to make transformative changes we need to develop the right technology for the right populations for the right purposes. The goal of our network is to bring together a community of people from different backgrounds including charities and families of children with neurodevelopmental conditions, ethicists, experts in brain development, psychologists, psychiatrists, bioengineers, physicists, regulators and policy makers to develop a new generation of neurotechnology to drive forwards precision medicine for infants and young children with neurodevelopmental conditions.
The scope of our network is to: (1) build an inclusive community and develop a hub that allows academics from the bioengineering and medical fields, industry and innovators, parents and people with various neurodevelopmental conditions to connect (2) identify priorities and gaps and publish our results, and (3i) carry out innovative feasibility studies to support and attract larger investments, (4) investigate ethical challenges with parents and people with lived experience to ensure that neurotechnology developments are acceptable, safe and feasible for children and parents; (5) create roadmaps to accelerate the development of new technologies for assessment, monitoring and interventions in the clinic and at home, and develop strategies for companies to invest in these technologies, to make them affordable and implement them in the UK health service, and (6) propose training programmes to train a new generation of scientists in this new interdisciplinary field.