‘Patient care pathway’ survey

Ataxia UK is working with researchers at University College London and the European Brain Council to learn more about the healthcare experiences of patients with ataxia in the UK, whether at a Specialist Ataxia Centre or  through  primary, secondary and tertiary centres of care.

We will gather this information through an online survey aimed at people with ataxia who are aged 16 and above (the survey can also be completed by someone else on their behalf). The data will also help us identify what works best for patients with ataxia, and to make policy recommendations for improvements in healthcare.

The survey can be found online here, further information about the study is here, and the survey definitions are found here. Alternatively, we can provide a paper version. Please contact Julie Greenfield, Ataxia UK’s Head of Research for any questions or further information. 


After completing the 'patient care pathway' survey you may also wish to partake in the following:

Patient attitudes to genome editing for prevention of heritable disorders: Social and Ethical implications

You have been invited to take part in a research study conducted by University College London (UCL). The study aims to explore the opinions and knowledge of those in heritable disease communities regarding genome editing and its applications. This research is in the form of an online survey. The survey will explore the different aspects of the technology itself, as well as its applications in a medical setting for the treatment of heritable disease. The study will also explore the attitudes of people with experience of heritable diseases towards the introduction of genome editing in embryos for correction of mutations.

We are looking for a variety of people within these communities, those affected and also their family members. Additionally, anyone who is involved in the community but does not have a family member affected is also welcome to join.

You can find the survey here. The survey can be completed via the weblink on smart phones, on laptop or desktop and should not take more than 15 minutes to complete. The deadline to complete this survey is 30th May 2019. We really hope to broaden the discussion to allow all disease communities to be heard. Your time and input are truly appreciated.