Ataxia UK Patient Care Pathways Survey |
1. Introduction
Thank you for taking the time to complete and submit this survey. Please take time to read the participant information sheet provided alongside this survey 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 ataxia in the UK, in order to understand ataxia patients’ care pathways and history of accessing specialist ataxia centres in the UK.
You may wish to discuss your answers to the survey with your parents if you were diagnosed when you were very young. Parents/carers/guardians filling in the survey should respond as per the patient’s opinion, not your own.
Personal details and confidentiality
All the information you provide during the course of this study will be kept confidential. Only the appointed research team will have direct access to your name and email address, if you provide them, and your survey responses. The survey can be completed anonymously if you wish, ensuring that nobody taking part or working on the study will be able to identify you from your survey responses, unless you indicate that you are willing to be contacted for future research and/or would like to receive a copy of the study results via email at the end of the study.
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 way, 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.
Organisation and funding of the study
This study has been sponsored by the European Brain Council (EBC), is funded by Takeda Pharmaceutical Company Ltd and Reata Pharmaceuticals Inc and is being carried out by the charity Ataxia UK, University College London and Costello Medical, a UK-based healthcare consultancy, who are providing scientific support with the study.
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 Greenfield:
Email address: jgreenfield@ataxia.org.uk
Telephone: 020 7582 1444
Address: Ataxia UK. 12 Broadbent Close, London, N6 5JW.
Completing the study
Please answer all questions, unless indicated otherwise, by ticking the relevant box or by writing your answer.
The purpose of this study is to gather the experiences of care of people with ataxia in the UK, in order to understand ataxia patients’ care pathways and history of accessing specialist ataxia centres in the UK.
You may wish to discuss your answers to the survey with your parents if you were diagnosed when you were very young. Parents/carers/guardians filling in the survey should respond as per the patient’s opinion, not your own.
Personal details and confidentiality
All the information you provide during the course of this study will be kept confidential. Only the appointed research team will have direct access to your name and email address, if you provide them, and your survey responses. The survey can be completed anonymously if you wish, ensuring that nobody taking part or working on the study will be able to identify you from your survey responses, unless you indicate that you are willing to be contacted for future research and/or would like to receive a copy of the study results via email at the end of the study.
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 way, 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.
Organisation and funding of the study
This study has been sponsored by the European Brain Council (EBC), is funded by Takeda Pharmaceutical Company Ltd and Reata Pharmaceuticals Inc and is being carried out by the charity Ataxia UK, University College London and Costello Medical, a UK-based healthcare consultancy, who are providing scientific support with the study.
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 Greenfield:
Email address: jgreenfield@ataxia.org.uk
Telephone: 020 7582 1444
Address: Ataxia UK. 12 Broadbent Close, London, N6 5JW.
Completing the study
Please answer all questions, unless indicated otherwise, by ticking the relevant box or by writing your answer.
| 10% |