Developing responsible neurotechnology for infants and children with neurodevelopmental conditions

在英国，大约十分之一的儿童患有神经发育疾病(包括自闭症谱系障碍、ADHD、智力障碍以及特定的学习和运动障碍)。神经发育状况通常会对患者(及其家人)的生活质量产生终生影响。这包括平均较低的教育程度、较高的失业率、缺乏独立性、对暴力的敏感性以及较高的精神健康问题发生率。总体而言，几乎没有有效的治疗方法。关键因素是在大脑发育的关键时期完成后的延迟诊断，以及具有相同伞形诊断的个体在临床特征和潜在生物学方面的重大差异，这意味着“一刀切不适合所有人”。精准医学旨在通过根据个人大脑状况量身定做治疗方法来改变医疗保健。它基于这样一种假设，即如果诊断基于潜在的原因或机制，而不仅仅是症状，那么诊断可以得到改善，而且大脑发育中的非典型可能先于一些明显的行为差异。然而，将精确医学应用于患有神经发育疾病的幼儿，取决于是否有准确可靠的方法来测量大脑活动和行为。例如，为了帮助及早发现有困难的儿童，我们需要测量家庭或托儿所中的大脑活动的方法。为了确定帮助儿童的最佳方法，并在需要提供这些方法时提供帮助，我们需要能够在进行大脑测量时调整它们的工具。这些工具必须适用于所有儿童，包括那些严重智力或运动残疾的儿童，因此我们需要在运动或注意力需求较低的任务中测量大脑活动的工具，如眼球跟踪或触摸屏设备。尽管在开发新技术来测量婴幼儿的大脑功能方面取得了重大进展，但临床上使用的仪器很少。一个挑战是确保这些技术的设计允许一致的应用，这样就可以可靠地比较不同时间和不同儿童的读数。我们还需要更好的计算方法，将大量的多维数据转化为关于单个儿童的临床有用信息。因此，为了做出变革性的改变，我们需要为正确的人群开发正确的技术，以实现正确的目的。我们网络的目标是将来自不同背景的人聚集在一起，包括患有神经发育疾病的儿童的慈善机构和家庭、伦理学家、大脑发育专家、心理学家、精神病学家、生物工程师、物理学家、监管机构和政策制定者，以开发新一代神经技术，以推动为患有神经发育疾病的婴幼儿发展精准医学。我们网络的范围是：(1)建立一个包容性的社区，并开发一个枢纽，允许来自生物工程和医疗领域的学者、行业和创新者、父母和具有各种神经发育状况的人联系起来(2)确定优先事项和差距并公布我们的结果，以及(3i)开展创新的可行性研究，以支持和吸引更大的投资，(4)调查与父母和有生活经验的人的道德挑战，以确保儿童和父母可以接受、安全和可行的神经技术发展；(5)创建路线图，以加速开发用于临床和家庭评估、监测和干预的新技术，并为公司制定战略，以投资于这些技术，使其负担得起，并在英国卫生服务中实施，以及(6)提出培训计划，以培训这一新的跨学科领域的新一代科学家。

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.