Rare Diseases - Wesley Research Institute
Wesley Research Institute
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Wesley Research Institute predominately focuses on translational research; taking basic science discoveries to produce meaningful results that provide direct benefit to our patients.

About this research theme

Our research enables patient participation in national and international phase I-IV clinical trials with a focus on evaluating new therapies, drugs, and diagnostic tools to drive discoveries into standard clinical practice.

Engaged across four hospitals – The Wesley Hospital, St Andrew’s War Memorial Hospital, Buderim Private Hospital and St Stephen’s (Hervey Bay) – clinicians and patients located in both metropolitan and regional areas can participate.

Rare Diseases Research Objectives

Better treatments

Some of our research projects are looking onto potential new treatments. One study is hoping to reduce the number and severity of infections for patients with WHIM syndrome.

Improve understanding

Investigating new treatments to reduce the severity of symptoms in some diseases. One research study is investigating treatments to reduce pain when skin is exposed to sunlight for patients with EPP.

Increase survival and quality of Life

The A-T clinical trial is investigating a new treatment which will hopefully slow down the progression of the disease and improve symptoms such as ataxia (the inability to walk, talk and use fine motor skills).

World leading researchers

Researchers such as Professor Dave Coman are leaders in their fields. While they are striving to investigate new treatments, researcher like Dave also care very deeply about the A-T patients participating in the Clinical Trial.

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Rare Diseases Clinical Trials

A group of patients sitting together in their wheelchairs

Ataxia-Telangiectasia (AT) Study

Ataxia-Telangiectasia (A-T) is a rare genetic disorder with an incidence of approximately three in one million births. Patients with A-T often end up in a wheelchair by the age of ten and have a life expectancy of 25 years. Approximately 40 children in Australia currently have A-T.

MT7117 Study

This study is testing a potential new treatment for EPP or XLP that increases melanin in the skin, which protects you from sunlight.

Testing treatments to improve symptoms of Myositis

Myositis is a disorder in which the immune system attacks the muscles. It is hoped that this new treatment may help improve the symptoms of this disease.

WHIM Study

A Phase 3, Randomized, Double-Blind, Placebo-Controlled, Multicenter Study of Mavorixafor in Patients with WHIM Syndrome with Open-Label Extension (4WHIM)

Our Research Goals

Research into faster and more accurate diagnosis

Improve understanding around the causes of disease and better prediction of disease progression

Increase survival and quality of life for patients and families

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