Early-life predictors of primary school learning outcomes in children with complex special educational needs: A prospective longitudinal study of tube

多发性硬化症（TSC）是一种复杂的罕见遗传性疾病，其特征是一系列身体和行为困难，需要专家多学科的支持。虽然许多患有TSC的儿童可以在一些帮助下上学和参加活动，但TSC的表现会对每个儿童产生不同的影响。预测每个孩子将如何发展以及如何在学校最好地支持他们是具有挑战性的。这个博士学位将进一步我们的教育经验和TSC儿童在小学的成果的理解，通过与TSC的纵向队列，早期发展在硬化症（EDiTS）研究，和硬化症协会（TSA），英国慈善机构的家庭受TSC影响。学生将首先使用EDiTS研究中的现有数据来研究学龄前儿童的认知功能，入学准备和神经发育状况之间的关联，该研究从出生起就一直在跟踪TSC儿童。其次，我们会采用多种方法，包括标准化问卷、访谈、焦点小组和网上实验，以描述和衡量TSC在小学的教育成果、学习概况和专业设置。第三，早期生活的预测学习成果在TSC将确定使用纵向数据。在TSA实习期间，学生将获得支持，为教育专业人员提供经认证的培训模块，并为家庭提供支持。将与海训方案社区的成员共同编制调查结果的简明摘要，并通过专门的教育活动传播。所获得的知识将推广到其他人口，包括有复杂特殊教育需求和残疾的儿童，确保产生更广泛的影响。需要循证研究为干预和教育实践提供信息，为患有复杂神经遗传疾病的儿童提供正确的教育机会，以改善长期结果和生活质量。

Tuberous sclerosis complex (TSC) is a complex rare genetic condition characterised by a range of physical and behavioural difficulties, which require specialist multidisciplinary support. While many children with TSC can attend school and participate in activities with some assistance, the manifestations of TSC will affect each child differently. It is challenging to predict how each child will develop and therefore how best to support them at school. This PhD will further our understanding of educational experiences and outcomes of children with TSC in primary school by working with a longitudinal cohort of TSC, theEarly Development in Tuberous Sclerosis (EDiTS) Study, and the Tuberous Sclerosis Association (TSA), the UK charity for families affected by TSC. The student will firstcharacterise associations between cognitive function, school readiness and neurodevelopmental conditions in the preschool years using existing data from the EDiTS Study, which has been following children with TSC from birth. Secondly, multiple measures including standardised questionnaires, interviews, focus groups and online experiments will be used to describe and measure educational outcomes, learning profiles and specialist provision in primary school for TSC. Thirdly, early-life predictors of learning outcomes in TSC will be identified using longitudinal data. During an internship with the TSA, the student will be supported to deliver accredited training modules to educational professionals and in providing support to families. Accessible summaries of findings will be co-produced with members of the TSC community and disseminated through a dedicated education event. Knowledge gained will extend to other populations ofchildren with complex special educational needs and disabilities, ensuring broader impact. Evidence-based research is needed to inform intervention and educational practices to provide the right educational opportunities for children with complex neurogenetic conditions, in order to improve longer term outcomes and quality of life.