Patient's attitudes towards clinical trials in ataxia
Research type
Research Study
Full title
Patient's attitudes to clinical trials in ataxia
IRAS ID
260860
Contact name
Paola Giunti
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
UCL Data Protection, Z6364106/2019/03/195
Duration of Study in the UK
0 years, 3 months, 31 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). As we learn more about these conditions, more clinical trials aiming to test the efficacy and safety of novel therapies are being initiated.
Clinical trials often struggle to recruit sufficient participants to either commence the trial or make data obtained reliable. The aim is to survey ataxia patients about trial design preferences in order to make recommendations about how we can improve trial design and thus improve recruitment, participation and the overall trial experience for participants.
In this survey we will ask ataxia patients about previous trial experience, ideal length and frequency of visits during the trial, procedures they would be comfortable with, symptoms they would like to be targeted, factors which would increase participation as well as general trial design preferences. The respondents will be members of Ataxia UK and FARA patient support organisations. The participants will be invited to join the study via advertisements on Ataxia UK and FARA social media websites, advertisements in Ataxia UK print materials and via the Ataxia UK and FARA mailing list. The survey will be open to those over the age of 16 who are living with ataxia in the UK and USA. The survey will take approximately 20 minutes to complete and will be delivered via an online platform (SurveyMonkey). The survey will be live for two months after which the results will be analysed. These results will enable us to make suggestions about trial design as preferred by those participating in them.
REC name
London - Hampstead Research Ethics Committee
REC reference
19/LO/0764
Date of REC Opinion
7 May 2019
REC opinion
Further Information Favourable Opinion