Longitudinal Web-based Profiling of Students with Rare Diseases
Research type
Research Study
Full title
Longitudinal Web-based Profiling of Students with Rare Diseases in Schools in England - Supporting Teachers and Improving Care
IRAS ID
316909
Contact name
Paramala Santosh
Contact email
Sponsor organisation
King's College London
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Mental health difficulties in children are significantly prevalent across schools in England. Rare and severe psychiatric disorders of low prevalence in children are often neglected. Approximately 6000 children are born in the United Kingdom every year with an undiagnosed genetic condition, otherwise known as a syndrome without a name (SWAN). Some of these individuals may have a rare disease (RD) but without the correct diagnosis, they face multiple barriers to receiving treatment and support, causing psychological distress. School teachers care for children and young people (CYPs) with RDs daily but receive little to no training or support. Supporting school teachers to identify and teach children with undiagnosed conditions and RDs may reduce delays in diagnosis and improve the wellbeing of patients, parents and teachers.
This is an exploratory 2-year study assessing the rare disease profiles and neuropsychiatric symptoms of CYPs at special and mainstream schools in England. Alongside, this study will assess the wellbeing of parents and teachers caring for CYPs. This will be done in five stages. First, (1) a questionnaire assessing teacher wellbeing in the context of RD management will be created using focus groups. Next, this study will (2) recruit CYPs, teachers and parents from both special and mainstream schools and (3) obtain their informed consent. Following, (4) RD profiles and parent and teacher wellbeing will be assessed using the web-based HealthTrackerTM platform. Psychoeducational support packages will be (5) developed based on the assessment results and (6) participants will complete follow-up assessments at 6 monthly intervals to understand RD symptom progression. The psychoeducational packages will be developed according to symptom clusters, rather than specific RD diagnoses, to ensure that CYPs with SWAN are included.
REC name
South Central - Oxford C Research Ethics Committee
REC reference
24/SC/0168
Date of REC Opinion
12 Jun 2024
REC opinion
Unfavourable Opinion