Taking Part in Research What can you do to help with research? Ataxia UK helps researchers to recruit people with ataxia to take part in trials or contribute to other research. Occasionally ‘normal’ volunteers who are not affected by ataxia are also required. A list of research projects in which you may be able to take part are posted here. These can include providing blood samples, completing questionnaires or taking part in treatment trials. In some cases participants are needed for natural history studies. These are important to collect information about the how the condition affects people and how it progresses over time, which is useful information when doing treatment trials. In order to be kept informed of any opportunities to participate in research projects and trials it is important to join Ataxia UK. By telling us exactly what kind of ataxia you have been diagnosed with we can inform you of relevant opportunities, as some studies are focused on only one type of ataxia. We are very grateful to all who volunteer to participate in such research studies. It wouldn't be impossible for some studies to take place without this help. Any researchers involved in ataxia studies requiring participants are welcome to contact Ataxia UK ([email protected]). All studies will need to have relevant Ethics Committee approvals in place and comply with best practice. List of current opportunities to help with research: A list of scientific and medical research projects currently looking for volunteers are listed below, divided by the type of ataxia that is being studied. There are also sometimes opportunities to take part in healthcare studies. Specialist Ataxia Centres – These Centres are involved in a number of ongoing research studies. See here for further details: Ataxia UK accredited Specialist Ataxia Centre; London, Sheffield & Newcastle Specialist Ataxia clinic - Oxford For people with ataxia of unknown cause General information about genetic tests available to diagnose ataxia can be found here To take part in genetic studies, please have a look at the following links: Genomics England - Recruiting participants between November 2013 and September 2014 in London Genetic testing in the ataxias - Oxford Exome sequencing - Newcastle For people with Friedreich's ataxia Research trial for speech perception in Friedreich’s ataxia – recruiting now (for general information about taking part in hearing research at Manchester University, see this flyer) Hearing aid trial in Friedreich's ataxia and spinocerebellar ataxias (Also see patient information leaflet) Natural history study in Friedreich's ataxia (EFACTS)Developing a new tool to measure how nerves are affected in FA (Also see patient information leaflet) For people with all types of ataxia Movement difficulties in people with ataxia For people with cerebellar ataxia Hearing aid trial in Friedreich's ataxia and spinocerebellar ataxias (Also see patient information leaflet) Movement control and motor learning in spinocerebellar ataxia 6 Healthcare research 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 a healthcare, which hopefully results in improvements in medical care whilst also helping to raise awareness of ataxia. A list of current opportunities are found below: Talking to children about inherited conditions (Also see patient information leaflet). ‘I would like to say that the nicotinomide trials I have been involved with have so far been encouraging and fI eel proud to know that some day the quality of life of those with Ataxia may be improved.’ Patrick O’Mara Brain donation Ataxia UK is occasionally asked about brain donations for research purposes once an individual with Ataxia has passed away. Studies using donated samples of the brain and spinal chord are important in furthering researchers understanding of ataxia, and it also helps them to develop treatments. If you are interested in this there are a number of Brain Banks around the UK that you can contact for further information. See the Human Tissue Authority website for further details.