Characteristics of patients with Tuberous Sclerosis Complex (TSC) in New Zealand

Project code:  MHS159


  • Centre for Longitudinal Research




Lisa Underwood

Tuberous Sclerosis Complex (TSC) is a multi-system genetic disorder that affects the brain and major organs. Individuals with TSC experience a wide variety of complex health problems; often needing to negotiate multiple care pathways simultaneously. Most commonly, the brain, kidneys, liver, heart, lungs and skin are affected. Around 90% of people with TSC have epilepsy and TSC significantly increases the risk of autism spectrum disorder, attention-deficit hyperactivity disorder, intellectual disability and cognitive deficits.

There have been great advances in worldwide research on TSC in recent years. However, to date, no research has been carried out in NZ. As such, there is no evidence on the demographic/clinical characteristics and health care needs of patients with TSC in NZ, particularly among Māori and Pacific peoples.

This project aims to describe the socio-demographic and clinical characteristics of TSC patients in NZ.

The summer student will carry out secondary analysis of routine health data accessed via the Statistics NZ Integrated Data Infrastructure (IDI). The Publicly Funded Hospital Discharges IDI dataset will be interrogated to identify TSC-related hospital events. TSC-related events will be identified by searching for the ICD clinical codes for TSC. Data extracted will include gender, ethnicity, event type, speciality code and admission type.


This project will provide an opportunity for a medical student interested in rare diseases or genetic conditions to develop independent research skills, data analysis, presentation of results, and communication of research findings.

The student will be supervised within the research team and there will be opportunities to engage with clinicians at Starship.

Specific skills taught will be: working as part of a large multidisciplinary team, quantitative research methods, data processing and statistical analysis and writing skills for publication.

The project would most suit a third year student, especially someone interested in continuing with an honours project. Second year students will also be considered. Skills required are enthusiasm and initiative, an ability to communicate, and independence, combined with a genuine interest in research and a demonstrated ability to work in a team environment.