Friedreich’s Ataxia Care Pathways – Patient Survey
Thank you for taking the time to complete and submit this survey. Please read the participant information provided below carefully, and feel free to discuss it with others, such as your family and friends.
The purpose of this study is to gather the experiences of care of people with Friedreich’s ataxia (FA) in the UK, in order to understand ataxia patients’ care pathways for the management of specific symptoms associated with Friedreich’s ataxia. More specifically, this questionnaire aims to identify which aspects of FA management are most important to patients, including their perceptions of the quality of the medical care they receive for both FA progression and associated conditions.
You may wish to discuss your answers to the survey with your parents if you were diagnosed when you were very young. For those with FA who are currently under 16 years old the parent / guardian should complete the questionnaire. Parents/carers/guardians filling in the survey for those of 16 and above should respond as per the patient’s opinion, not their own. The consent to take part in the survey is requested from the person living with Friedreich’s ataxia by answering question 1 before proceeding to the survey questions. This is important for parents / guardians filling the questionnaire on behalf of the person living with FA. Questions 1 and 2 are mandatory in order to continue the survey, then you will be asked to answer a list of questions about your experience living with Friedreich’s ataxia in terms of treatment and care you have received from healthcare professionals. It will take about 20 minutes to fill this survey.
Inclusion criteria: people aged 16 and over living in the country where the survey is rolled out who have a confirmed diagnosis of Friedreich’s ataxia with a genetic test; parents /guardians of those with FA under 16 who agree to their parent or guardian taking part on their behalf.
Personal details and confidentiality
Your survey responses will be combined with responses from other patients in the study, to allow analyses to be carried out by the appointed research team. This survey is anonymous therefore it will not be possible to identify any single patient from the pooled survey response data. All data will be stored in a form protected by passwords so only people working on the study will be able to access it, and will be deleted 6 months after study analyses are complete. Only the research team at the Ataxia Centre in University College London will be able to access the data collected.
Organisation and funding of the study
This study has been sponsored by the pharmaceutical company Biogen and is being carried out by University College London in collaboration with the charity Ataxia UK.
Contact information
Should you wish to ask any further questions about the study before, during or after it has been completed, or if you have any concerns, please contact Julie Vallortigara by email.
Email : j.vallortigara@ucl.ac.uk