Ataxia UK Patient Survey: Version 1
Research type
Research Study
Full title
Ataxia UK Patient Care Pathways Survey
IRAS ID
252966
Contact name
Paola Giunti
Contact email
Sponsor organisation
European Brain Council (EBC)
Duration of Study in the UK
0 years, 4 months, 25 days
Research summary
The ataxias are a group of rare neurological disorders characterised by a loss of balance, coordination and speech. Ataxias can be acquired, inherited or sporadic and can also be the symptom of other conditions, such as multiple sclerosis (MS). Ataxia patients require complex multidisciplinary care including appointments with numerous health care professionals such as neurologists, general practitioners (GPs) and physiotherapists.
There are a number of Specialist Ataxia Centres (SACs) in the UK designed to provide coordinated care to address the specific needs of ataxia patients.
This research is designed to investigate the evidence base for SACs, with a view to developing policy recommendations on care for people living with ataxia in the UK. Similar surveys are planned for other European countries, with an aim to compare the results of these surveys to develop guidance for ataxia care across Europe. To gain a comprehensive understanding of ataxia patient care in the UK, a survey will be conducted.The survey will specifically explore time to diagnosis, access to coordinated care, quality of the care received and types of treatments received by ataxia patients in the UK. Participants will be invited to join the study via advertisements on Ataxia UK social media websites, advertisements in Ataxia UK print materials and via the Ataxia UK mailing list. The survey will be open to those over the age of 16 who are living with Ataxia in the UK.
This research is sponsored by the European Brain Council (EBC) and is jointly funded by Takeda Pharmaceutical Company Ltd and Reata Pharmaceuticals Inc. Costello Medical have been contracted to conduct the research and are working in collaboration with Chief Investigator Paola Giunti at University College London Hospital and Ataxia UK, a leading Ataxia patient representative group, who will be handling patient recruitment and survey distribution.
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
19/EE/0030
Date of REC Opinion
19 Feb 2019
REC opinion
Further Information Favourable Opinion