ATAxia uk's involvement in research

Facilitating the recruitment of participants for research studies

Ataxia UK supports research by helping to recruit participants to scientific research and healthcare studies. Go to our page Taking part in research to find out about opportunities to get involved in projects. We also welcome enquiries from researchers needing support (research@ataxia.org.uk)

Information sharing

Information exchange is imperative for research progress thus this is actively encouraged and facilitated. Information on ataxia research and developments is provided to people affected by ataxia in lay terms via Ataxia UK’s magazine, e-newsletters and conferences. You can sign up using the form below to receive our researcher's registry for updates for more detailed, research-specific updates.

Research Conferences

Ataxia UK works jointly with other ataxia charities in organising international conferences and meetings. The National Ataxia Foundation (NAF), the Friedreich’s Ataxia Research Alliance (FARA), and Ataxia UK are pleased to host the International Congress for Ataxia Research (ICAR) 2024 in London, UK on November 12-15, 2024. For more information, please visit: International Congress for Ataxia Research (ataxiacongress.org). 

Fostering collaborations and working together

Ataxia has been working closely with many ataxia charities worldwide, as well as other charitable organisations and pharmaceutical companies, as we believe that by working in partnership we will get the best results. Partnerships have involved jointly funded projects, co-hosting conferences, coordination of information exchange and new initiatives to drive research forward. Read our research partners page to see who we work with.

Dentatorubral-pallidoluysian atrophy (DRPLA) Research Programme

Ataxia UK has a collaborative relationship with CureDRPLA. CureDRPLA is a US-based non-profit organisation founded by Paul and Andrea Compton. The mission of CureDRPLA is to connect families, physicians and scientific investigators to further DRPLA research. CureDRPLA has engaged Ataxia UK to help further its efforts. Both Drs. Julie Greenfield and Silvia Prades from Ataxia UK are involved in the DRPLA Research Programme. Ataxia UK and CureDRPLA are working with industry and academic partners to facilitate the rapid progression of clinical studies for novel DRPLA therapeutics.

CureDRPLA provides funding for innovative and relevant research on DRPLA. To find out more please contact Dr Silvia Prades (spradesabadias@ataxia.org.uk).

The CureDRPLA Global Patient Registry aims to collect data on up to as many DRPLA patients as possible to better understand DRPLA progression and monitoring the quality of health. Participants will be asked to complete a set of questionnaires after enrolment with email requests for yearly updates. Data collected include participant demographic and contact information, details about diagnosis, functional mobility status, health economics, medical history, and activities of daily living. Ataxia UK and CureDRPLA are the lead organizations of this Registry. If you would like to find out more please visit https://curedrpla.org/en/global-patient-registry/

Encouraging involvement in ataxia research

It is important to build capacity and ensure more researchers are attracted to ataxia research. In addition we are working with pharmaceutical companies to encourage their involvement in ataxia research. You can also look to Ataxia UK to apply for a grant for your research.

For any research enquiries contact: research@ataxia.org.uk

Ataxia UK support of Association of Medical Research Charities (AMRC) Position Statements

Ataxia UK is a medical research charity and as such we do not perform research involving animals ourselves, although we do fund research projects involving animals. Please read Ataxia UK’s policy on the use of animals in research here.

We are members of the Association of Medical Research Charities and we agree with their policy on the use of animals in medical research. They have produced an information leaflet explaining why we believe research using animals is important.

Ataxia UK also supports the AMRC's position statement on supporting research in universities.

Ataxia UK recently passed the peer review audit by the Association of Medical Research Charities, of which we are a member.