Healthcare research studies normally have the overall aim of improving the medical care people receive. These are not always focused solely on ataxia but may be looking at improving the medical care of a group of conditions that are relevant to people with ataxia eg: people with genetic disorders or rare conditions generally. We encourage people with ataxia to take part in these studies to ensure their voices are heard in healthcare, which hopefully results in improvements in medical care whilst also helping to raise awareness of ataxia.

‘I would like to say that the nicotinomide trials I have been involved with have so far been encouraging and I feel proud to know that some day the quality of life of those with Ataxia may be improved.’ Patrick O’Mara

Sexual functionining in Friedreich's ataxia questionnaire