We need your help.
Survey of the impact of Rett syndrome on the lives of people with the condition alongside their families and caregivers
Reverse Rett are working with Costello Medical, an independent research consultancy, to develop a cost of illness model for Rett syndrome in the UK.
This important survey aims to estimate the financial impact on families, the NHS, and social services, including healthcare appointments, home adaptations, and lost caregiver wages.
The findings will provide valuable data to healthcare decision-makers, including NICE, to inform future treatment decisions. The survey will be open from the 21st of March until the 11th of April 2025.
Before you decide if you would like to take part, it is important that you understand why the survey is taking place and what it would involve.
What is the purpose of the survey?
This survey forms part of a research study aiming to estimate the total costs associated with caring for individuals with Rett syndrome in the UK.
The study is considering costs for the National Health Service (NHS), for Social Services, and wider costs for families, caregivers and society. More specifically, the costs will include:
- The cost to the NHS of appointments and treatments for Rett syndrome, and
- Costs to families such as home adaptations and equipment, impacts on caregiver’s ability to work, and any other costs involved with caring for a person with Rett syndrome paid for directly by families
Information about the total costs associated with caring for people with a particular condition is vitally important for healthcare decision-makers. For example, this information could be used by the National Institute of Health and Care Excellence (NICE) in future, when they determine whether new treatments should be made available on the NHS.
Who can take part?
Anyone who cares for someone with Rett syndrome, such as parents or other family members. You must be able to read and understand English and live in the UK. You must also have access to the internet as it is an online survey.
What would we ask you to do?
We would ask you to complete an anonymous survey about the person you care for. The survey will ask questions about the impact of caring for a person with Rett syndrome in day-to-day life such as asking about costs of home adaptations (e.g. hoists, bathroom adaptations), the number of appointments you typically attend, how far you need to travel for appointments etc.
The survey will take between X and X minutes to do. Please complete the survey in one sitting. At the end of the survey please select ‘submit’ and then ‘save my response to edit’. Whilst the browser is still open, you can then check and edit your responses. If you do not have time to complete the whole survey, please feel free to answer as many questions as you can before submitting.
What will happen if you decide to take part?
If you agree to take part, any treatment and care the person you care for receives will not change and your answers will not be sent to your healthcare team. The results from this survey will only be used to support the research activities being conducted by Reverse Rett.
As this is an online survey, you will not have to attend any appointments.
Taking part is voluntary and you can stop at any time.
What are the possible disadvantages of taking part?
The risks of doing this survey are low. The main risks are from thinking about an upsetting experience, if you have had a negative experience in the past. You may wish to contact Reverse Rett if you want to discuss this in more detail. Another possible risk is a data breach. Allowing your responses to be used in this study will not stop you from doing other studies.
What are the possible advantages of taking part in the study?
There are no direct benefits of taking part in the survey, but it is hoped that the results will help healthcare decision-makers to understand the costs associated with treating and caring for an individual with Rett syndrome. These results may also be used in future decisions about whether treatments for Rett syndrome should be funded by the NHS.
Will your personal details be kept confidential?
All responses will be kept anonymous and will be stored securely. Nobody taking part/working on the study will be able to identify you from your answers, so please avoid giving personal details in your answers such as your name, date of birth, where you live. Your answers will be combined with answers from other people who complete the survey, which will then be analysed by the research team.
Who is organising and funding the survey?
This survey is organised by Reverse Rett and is being run by Costello Medical (an independent, UK-based research consultancy).
Contact information
If you have questions about the study before, during or after it has been completed, or if you wish to seek support during or after the survey, please contact Reverse Rett by:
- Email: [email protected]
- Phone: 0161 552 5001
Thank you for taking the time to read this information.