One of the main aims of Euro-ataxia is to accelerate research and treatments for people with ataxia. This co-ordinated effort between our member organisations supports research in a number of ways, such as providing patient input and advice to research studies and assisting in recruitment of participants to trials. 

 

Euro-ataxia Patient Charter

Euro-ataxia believes that all ataxia clinical studies should involve the input of people affected by ataxia (patients and their parents or carers) and patient group representatives. Our Patient Charter outlines our vision for this, why it is important, and proposes how it should be implemented.

 

Research Projects

Progression chart of spastic ataxias (PROSPAX) project: The PROSPAX project, which launches in June 2020, is a novel collaborative effort between neurologists across Europe, including the UK and Canada. The 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, markers of progression and animal models. The project will initially focus on ARSACS and SPG7, but will establish a more general research framework that will be applicable to other spastic ataxias over time. Euro-ataxia will be involved in the project as an active partner representing European ataxia patients, with support from Ataxia UK and the German ataxia group DHAG.

Euro-ataxia is also partnered with three European network projects on the ataxias. These projects have been awarded funding by the European Commission and Euroataxia is playing an active role to ensure their success:

European SCA3/Machado Joseph disease initiative (ESMI): This project will involve 800 patients with spinocerebellar ataxia type 3 from seven European Centres and will involve creating a database with brain imaging scans, standardised clinical assessments and blood samples. This will enable researchers to find information on the progression of the disease and reactions to treatments. This research will be coordinated at the German Centre for neurodegenerative disease in Bonn, Germany. 

Preparing for therapies in autosomal recessive ataxias: This project involves seven centres across Europe and one in Canada. The aim is to develop a large registry of autosomal recessive cerebellar ataxia patients to identify any 'markers' which can indicate whether clinical trials are effective. In addition, it will also help to identify novel mutations or genes which cause recessive cerebellar ataxias, aiding future diagnoses. Lastly, the team (based at the University of Tubingen, Germany) will be focusing in on ataxia with Coenzyme Q10 deficiency and ARSACS to test potential drugs in animal models. This multi-faceted, transcontinental trial is expected to produce some very interesting information which can be used to shape future human trials.

The European Friedreich’s ataxia Consortium for Translational Studies (EFACTS): This is a study originally funded by the European Commission and that will gather vital information about the progression of Friedreich’s ataxia (FA) which can be delivered to patients to give them a better knowledge of their prognosis and the development of their condition. The purpose is to generate a large FA patient database, alongside an integrated clinical and natural history database; this will be linked to a biological samples repository. It also aims to define a panel of clinical assessment tools for use in future trials. There are two Euro-ataxia representatives on the Steering Committee for this project. It is currently supported by grants from Euro-ataxia member groups and pharmaceutical companies.

 

Ataxia Global Initiatives

The SCA (spinocerebellar ataxias) global initiative, launched in 2019 by ataxia specialist Prof Klockgether, aims to create a network of ataxia clinicians with expertise in the spinocerebellar ataxias, to work together and share information on a global scale. This includes all ataxias that are inherited in a dominant way, not just the common SCAs (e.g.: SCA1, 2, 3, 6 and 7), but also the rarer SCAs and conditions such as DRPLA. It is of particular importance for the rare ataxias where there may be few people in each country, therefore global collaboration is essential for trials.

A SCA global Steering Committee was set up, consisting of ataxia specialist clinicians, with representation from Europe, North America, South America, Australia and Asia. Ataxia UK’s Head of Research, Julie Greenfield, was invited onto the Steering Committee representing Ataxia UK and Euro-ataxia, whilst Sue Hagan (from the National Ataxia Foundation - NAF) was the other patient group representative. 

Similarly, the ARCA global initiative has been set up for the recessively inherited ataxias (e.g.: ARSACS, AOA1, AOA2, SPG7 etc.). This was launched in March 2020 by ataxia specialist neurologist, Prof Synofzik (from Tubingen). Julie Greenfield is also on this Steering Committee and we will report more as the project develops. 

SCA and ARCA global has organised a joint conference to bring researchers together. This will be taking place online from 19-21 October 2020.

Further information may be found at http://ataxia-global-initiatives.net/

 

Research Updates

Euro-ataxia Annual Conference 2019

Euro-ataxia Annual Conference 2018

International Ataxia Research Conference 2017

Euro-ataxia Annual Conference 2016

International Ataxia Research Conference 2015

 

Research Blogs

ATAXIE - ADCA - SCA: Blog run by Euro-ataxia President Cathalijne van Doorne. Aims to keep people informed about new developments in the field of research into autosomal dominant cerebellar ataxia (ADCA), spinocerebellar (SCA) and other ataxias. Also reports on activities that raise awareness of these rare disorders in European Parliament

Friedreich Ataxia Scientific News: Blog run by Euro-ataxia board member Juan Carlos Baiges. Provides news and information about Friedreich's Ataxia and other topics related to rare diseases.

SCA Source: A website where research on SCAs and related ataxias is written in plain language by SCA scientists. Aims to make research more readily accessible and understandable to ataxia patients and families. 

 

More Information

For more information on the latest ataxia research, take a look at our member pages and you can also look at our list of suggested websites including other ataxia charities and other useful resources.

If you are a researcher from academia or industry and you are interested in contacting us to find out more about how we could help you, please email [email protected]

 

Policy

ETRAVIRINE position statement

Read our position statement on ETRAVIRINE here: