Journal article
A longitudinal study of the Friedreich Ataxia Impact Scale
G Tai, EM Yiu, LA Corben, MB Delatycki
Journal of the Neurological Sciences | Published : 2015
Abstract
Abstract Background Quality of life in Friedreich ataxia (FRDA) has been explored using various generic health status measurement tools, most commonly the Short Form Health Survey Version 2 (SF-36v2). The tool did not address many specific issues related to disease impact in people with FRDA. The Friedreich Ataxia Impact Scale (FAIS) was developed to examine clinically relevant areas in FRDA. The aims of the current study were to assess the relationship between the FAIS and clinical characteristics of FRDA, as well as to determine the responsiveness of the FAIS to change over one and two years. Methods One hundred and four individuals with FRDA, homozygous for the GAA expansion in intron 1 o..
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Awarded by National Health and Medical Research Council
Funding Acknowledgements
The authors thank the participants for their involvement in this study and Dr Jeremy Hobart for the provision of the FAIS prior to its publication. Funding was from the Friedreich Ataxia Research Association (Australasia) and the Friedreich Ataxia Research Alliance (USA). EMY is supported by a National Health and Medical Research Council (NHMRC) Early Career Fellowship (1073323) and LAC is supported by a National Health Medical Research Council (NHMRC) Early Career Fellowship (1037002). MBD receives grant support from NHMRC (1026394, 1041860, 1048795, 1044175, 1046037, 1059666). This work was made possible through Victorian State Government Operational Infrastructure Support and Australian Government NHMRC IRIISS.