It would be impossible for some of these studies to take place without your help, and we're very grateful for your participation. For further information on taking part in clinical trials, take a look at Genetic Alliance UK's FAQ's on Clinical Trials booklet.
What does taking part in research entail?
Research trials and projects 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 how the condition affects people and how it progresses over time, which is useful information when doing treatment trials.
Carla and Adam Turner tell us about their daughter Eva's experience in taking part in a next generation sequencing research project:
"Thank you Ataxia UK! Your funding has meant we have successfully navigated the first step on our long and unknown journey. You have made a direct difference to our lives and for that we will always be grateful. Keep doing what you do: your funding makes a massive difference to ordinary families catapulted into an extraordinary life! ”
To stay informed of any opportunities to participate in research projects, 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.
Any researchers involved in ataxia studies who require 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.
Opportunities for people with Friedreich's ataxia to take part in clinical trials and research studies