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SPINOCEREBELLAR ATAXIA (SCA) Patient Registry The NZ NMD Registry covers all neuromuscular conditions including all forms of SCA, CANVAS, and FA. Talk to your Fieldworker or contact info@mda.org.nz to find out more. cardiac dysfunction, with congestive heart failure or arrhythmia being an important cause of morbidity and mortality and thus a focus of management. Disease progression in Individuals with CANVAS is very slow and life expectancy does not appear to be reduced. Research Research helps us better understand diseases and can lead to advances in diagnosis and treatment. Clinical Research Resources The US government website ‘clinicaltrials.gov’ lists all clinical trials and other research studies. Enter the condition in which you’re interested into the search bar and then click on the generated list to read descriptions of these studies. Please note: We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study. Research Grants 2024 Neuromuscular Research New Zealand is once again accepting funding applications for research relevant to New Zealanders living with neuromuscular conditions. Proposals most likely to be considered will be those which address standards of care (including best and/or innovative practice in supporting people with neuromuscular conditions); effectiveness and/or cost benefit of service delivery modes and interventions; prevalence and incidence of neuromuscular conditions; and proposals which extend existing research into treatment and cures. Research of a preliminary nature with the intention of developing further proposals for substantial financial support from elsewhere will also be favoured. Closing date for applications is Friday 20th October 2023 and we hope to advise the outcome by mid-December 2023. The lifespan of individuals with FA can be shortened due to cardiac dysfunction, with congestive heart failure or arrhythmia being an important cause of morbidity and mortality and thus a focus of management. Continued ... Register your application in advance by emailing nrft@mda.org.nz or go to the MDA’s website www.mda.org.nz/Our-Research/Apply-for-Funding