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WINTER 2024 InTouch | 17 Research Grants 2025 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 underlying mechanisms, 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 25th October 2024 and we hope to advise the outcome by mid-December 2024. 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 Useful Websites The Myositis Association – www.myositis.org The New Zealand Organisation for Rare Disorders – www.nzord.org.nz The Muscular Dystrophy Association (US) – www.mdausa.org The National Library of Medicine Clinical Trials information – www.clinicaltrials.gov Resources Jabari D, HeimA, Ciersdorff A, et al. Safety and tolerability of phenylbutyrate in inclusion body myositis. RRNMF Neuromuscular journal . 2024;5(1). doi : https://doi. org/10.17161/rrnmf.v5i1.21356 Machado PM, McDermott MP, Blaettler T, et al. Safety and efficacy of arimoclomol for inclusion body myositis: a multicentre, randomised, double-blind, placebo-controlled trial. The Lancet Neurology . 2023;22(10):900-911. doi : https:// doi.org/10.1016/S1474-4422(23)00275-2 Naddaf E. Inclusion body myositis: Update on the diagnostic and therapeutic landscape. Frontiers inNeurology . 2022;13. doi : https://doi.org/10.3389/fneur.2022.1020113 Naddaf E, Shelly S, Mandrekar J, et al. Survival and associated comorbidities in inclusion body myositis. Rheumatology . 2021;61(5):2016-2024. doi : https://doi.org/10.1093/ rheumatology/keab716 Nagy S, Khan A, Machado PM, Houlden H. Inclusion body myositis: fromgenetics to clinical trials. ​J Neurol. 2023;270(6):1787-1797. doi:10.1007/s00415-022-11459-3 Perez-Rosendahl M, Mozaffar T. Inclusion body myositis: evolving concepts. Curr Opin Neurol. 2022;35(5):604-610. doi:10.1097/WCO.0000000000001100 Snedden AM, Lilleker JB, Chinoy H. In pursuit of an effective treatment: the past, present and future of clinical trials in inclusion body myositis. Curr Treat Options Rheum. 2021;7:63- 81. doi:10.1007/s40674-020-00169-4 INCLUSION BODY MYOSITIS to research participation. As scientists make progress in understanding the mechanisms driving IBM, more specific interventions are being tested. However, delays in diagnosis often mean that individuals have progressed beyond the early stages of the disease, which is the most opportune time to test interventions. Additionally, due to the rarity of IBM, there are typically only a few specialized research sites worldwide, making it difficult for otherwise eligible people to participate. Below is a summary of recent and ongoing studies, some of which aim to address these barriers.