The National A-T Clinic
The National A-T Clinic was established in 2010 following long-term lobbying by BrAshA-T to the Queensland Government, who have unfortunately since withdrawn funding for the program.
BrAshA-T has taken on the task of ensuring this vital service continues to be available for all of those living with A-T throughout Australia. To facilitate this, BrAshA-T has appointed and fully funded a Clinic Co-ordinator to ensure the clinic continues to thrive.
Based at the Wesley Medical Research Centre and Queensland Children’s Hospital, the A-T clinic provides a team of expert doctors who aim to see every child in Australia diagnosed with A-T. Specialist doctors are in attendance from Neurology, Immunology, Respiratory, Genetics, Ophthalmology and Dermatology, as well as Allied health therapists, with the hope of expanding this to include Psychology and Oncology to ensure all aspects of A-T are addressed.
BrAshA-T can provide financial assistance to A-T families to enable them to attend the clinic, please refer to our Clinic Financial Support Policy.
Please contact us to register your interest in an upcoming clinic.
Professor David Coman
If not for Professor David Coman and Wesley Medical Research the National A-T Clinic would not have survived when government funding was withdrawn. David is a Paediatrician, Clinical Geneticist and Metabolic Physician who specialises in the diagnosis and management of children with rare diseases.
In 2020, David was instrumental in securing a $2.45 million grant for a clinical trial for A-T from the Federal Government's Medical Research Future Fund's Rare Cancers, Rare Disease and Unmet Needs. This very exciting trial aims to treat mitochondrial dysfunction in A-T using a novel form of anaplerosis.
34 A-T patients from across Australia are participating in the trial which was launched by the Federal Health Minister, Hon Greg Hunt MP, on 23 March 2022.
The trial concluded in March 2023. Anecdotally there were some encouraging results from the trial as reported by a number of the Australian families who participated. However the true test was the assessment of the extensive data collated throughout the trial which was published at the end 2023.
The analysis highlighted that patients demonstrated statistically and clinically meaningful improvements paving the way for the next step of the trial, the Open Label Phase commencing in February 2024 (restricted to Australian patients).
During this 12-month phase, patients will continue the use of triheptanoin without placebo. This will also lay the groundwork for an international Phase 3 Trial subsequent to the Open Label Phase.
Aims of the Clinic
The A-T Clinic is the only dedicated A-T clinic in the Southern Hemisphere and aims to:
- Develop expertise to manage this complex disorder
- Provide access to new and existing treatments
- Improve quality of life and health outcomes
- Promote and offer access to A-T research projects
- Facilitate the involvement in clinical trials
- Be a part of an international network of Ataxia Telangiectasia clinics
- Two clinics are held each year, with BrAshA-T providing financial assistance to A-T families to enable them to attend the A-T Clinic each year
The clinic also provides an invaluable opportunity for A-T families from across Australia to get together, share their experiences and provide support and understanding that could only be offered by families facing the same evolving challenges inherent in the A-T journey. Being a rare disease, and with only approximately 50 patients in Australia living with A-T, it is comforting for families to know that they are not alone.