Ataxia UK's involvement in research
Ataxia UK is a medical research charity with a clear objective: to provide funds and support to ataxia research with the goal of developing treatments and cures for the ataxias.
Since 2000 we have invested £6.75m in research.
There are many types of ataxia, including conditions such as Friedreich’s ataxia (FA) and the spinocerebellar ataxias (SCA). Our research strategy is to support projects on many different types of ataxia.
We believe in working collaboratively, to accelerate progress in research and raise the prospects for a cure. We will continue to work with researchers, patient groups and pharmaceutical companies around the world and to foster new relationships wherever there is great promise.
Working closely and engaging with people with ataxia is also a priority of the charity. See Ataxia UK’s Research Strategy, Annual Report and our Research Impact Report, detailing the impact Ataxia UK-funded research has made in the field. See this video from the Association of Medical Research Charities (AMRC) explaining how, together, the charity, public and industry sectors help make research happen in the UK.
Latest research updates
Presentations on the latest ataxia research updates from the 2021 Annual Conference can be viewed here. We work closely with other ataxia charities, including the Friedreich's Ataxia Research Alliance (FARA) and the National Ataxia Foundation (NAF) in the US. FARA has produced an FA Research Pipeline detailing current research on lead therapeutic candidates for the treatment of Friedreich's ataxia, and NAF have produced CA Research Pipelines for a number of Spinocerebellar ataxias and DRPLA. For the latest updates on Reata's Omaveloxolone treatment for FA see here. For further research updates, check the Research News section of the Ataxia UK website.
Ataxia UK Research Activities
Funding research in the UK and Internationally
Ataxia UK has been funding a range of projects over the years, from basic science research (such as understanding the disease mechanism of a particular type of ataxia) to more applied research including pilot trials of therapeutic interventions. See details of projects currently funded.
Many projects are jointly funded with other organisations. Being a member of the Association of Medical Research Charities, Ataxia UK follows best practice in managing the research programme.
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 (firstname.lastname@example.org)
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.
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 inaugural International Congress for Ataxia Research (ICAR) in Dallas, Texas, USA on November 1-4, 2022. For more information, please visit: https://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 (email@example.com).
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: firstname.lastname@example.org
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.
Join Our Researchers' Registry
If you are a researcher interested in receiving updates on information of relevance to ataxia research please join our registry. We send out an e-newsletter and email updates on events, funding opportunities and developments. Just complete the form below to join and receive updates.
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