Healthcare Research

Healthcare Research

ONLINE SURVEYS:

FA care pathway survey - The purpose of this study is to gather the experiences of care of people with FA in the UK, in order to understand ataxia patients’ care pathways for the management of specific symptoms associated with FA. More specifically, this questionnaire aims to identify which aspects of FA management are most important to patients, including their perceptions of the quality of the medical care they receive for both FA progression and associated conditions. Anyone age 16 and above with a confirmed diagnosis of FA can take part. For people younger than 16, their parent or guardian can take part on their behalf.

SCA6 and SCA27B survey - a 30-minute online survey to understand the genetic and environmental factors that influence the onset, severity and progression of SCA6 and SCA27B. This survey is being conducted by the University of Chicago and is for those aged 18 years and above with a confirmed diagnosis of either SCA6 or SCA27B.

REMOTE STUDIES/ PROJECTS:

Project Euphonia - recording speech samples to improve voice recognition software for people with dysarthria (speech that is difficult to understand). Part of Google's AI for Social Good programme.