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Research

 

Friedreich's ataxia (FA) was first described in 1863 by German physician Nikolaus Friedreich. However, it wasn't until 1996 that the underlying cause was discovered: a mutation in the gene for frataxin protein.

Research into FA is ongoing globally. Many New Zealanders with FA have participated in the Friedreich Ataxia Clinical Research Program led by Professor Martin Delatycki in Melbourne. This program involves comprehensive evaluations of neurological function, cardiac health, gait, speech, vision, hearing, quality of life, and sexual function in individuals with FA.  

The Friedreich Ataxia Clinical Research Program is part of the Collaborative Clinical Research Network in Friedreich's Ataxia (CCRN in FA). This international network aims to advance treatments and clinical care for FA by collaborating with pharmaceutical companies, government agencies, other research groups, and the patient community to facilitate clinical research and trials.

Nikolaus Friedreich

Nikolaus Friedreich

Partnership with Australia

FARA NZ works closely with our larger Australian cousins, fara Australia. The Australian organisation helps FARA NZ with our research goals and opportunities, and the way we operate for New Zealanders with FA.

 

Research Pipeline

The Friedreich’s Ataxia Treatment Pipeline is a visual tool for communicating the progress of research and development on lead therapeutic candidates.

 

New Zealand Patient Registry

The NZ Neuromuscular Disease Registry helps connect people living with FA to clinical trials and other research opportunities.

If you are interested in registering, please email the curator on nznmdregistry@adhb.govt.nz for more information.

 

FA is a rare condition, so without a patient registry to gather details in one place, finding enough people for a meaningful trial can take years, delaying the testing of potential therapies. Through registering, people become readily identifiable and can be contacted quickly in order to accelerate research opportunities. The NZ Neuromuscular Disease Registry is ethically approved, collects only clinical information that is relevant, and does not share any personal details with researchers or pharmaceutical companies but works to promote the interests of people with FA to the research community and to inform people with FA about relevant research opportunities.

Scientific News

The latest news on Friedreich’s Ataxia compiled by FARA