The PROSPAX project, which launched in September 2020, is a novel collaborative effort between neurologists across Europe, including the UK, and Canada. The PROSPAX project will focus on two conditions - ARSACS and SPG7. However, this survey is open to anyone with any type of ataxia or hereditary spastic paraplegia (HSP). This survey is your chance to have your voice heard by researchers, to make sure that the questions they are trying to answer are the ones that are important to you as a person living with the condition.

PROSPAX stands for PROgression chart of SPAstic ataXias. This ambitious project aims to study the progression of spastic ataxias over time, in a rigorous and harmonised way – from the clinical to the molecular level, including brain imaging, identifying markers of progression and studying animal models.

The researchers involved in the PROSPAX project are very keen to ensure that they focus their research on what the important challenges are for people living with spastic ataxia. In order to help them achieve this, we are gathering information directly from all people with ataxia or HSP about the symptoms and challenges of living with ataxia or HSP.

The researchers involved in the PROSPAX project will use the information gathered by this survey to plan their research.

We would be grateful if you could spend a few minutes completing this questionnaire.  All responses will be anonymous. The data collected will be pooled for analysis and shared with the researchers in the PROSPAX project, and with other interested parties such as other researchers. Data may be published in scientific journals and elsewhere.

By completing and submitting the survey you consent to taking part. As responses are anonymous, once your responses have been submitted it will not be possible to withdraw your consent or your responses. Anyone aged 15 or under should complete the survey with a parent, carer or guardian.

If you find answering these questions upsetting in any way then please discuss this with a healthcare professional, someone in your support network, or contact the Ataxia UK helpline (Mon-Thurs 10:30-14:30 on 0800 995 6037 or email help@ataxia.org.uk) or the Ataxia Charlevoix-Saguenay Foundation (email ataxia@arsacs.com).

On behalf of the PROSPAX research team, we thank you in advance for participating in this survey and for your important contribution to this research project.

How to complete the questionnaire
  • Please answer all questions, unless indicated otherwise, by ticking the relevant box or by writing in your answer.
  • If you are completing this survey as a carer please answer all questions on behalf of the person with ataxia or HSP.
  • All information should be about a single patient. In families with more than one affected individual, please complete a separate form for each person.
  • If you have any questions regarding the survey please email research@ataxia.org.uk.

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