Your experiences of care for Marfan or Loeys-Dietz Syndrome
Information Sheet
Project lead: Esther Ainley, Senior Research Associate
Picker, on behalf of the Marfan Trust, would like to invite you to take part in a survey. Before you decide whether you would like to take part, please take time to read the following information.
Picker (www.picker.org), an independent health and social care research charity, is running the survey on behalf of the Marfan Trust to understand your experiences of diagnosis, treatment, care, support, and any impacts of living with Marfan Syndrome or Loeys-Dietz Syndrome.
To take part, please click here or go to ‘bit.ly/MarfanTrust’ in your browser.
Who can take part?
You can take part if you’re aged 16 and over, have Marfan Syndrome or Loeys-Dietz Syndrome and live in the UK. You can also take part if you are a parent and/or carer of those with Marfan Syndrome or Loeys-Dietz Syndrome and live in the UK.
Do I have to take part?
No, taking part in the survey is voluntary. If you choose not to take part, it will not affect your care, and you don’t need to give us a reason.
Can a relative, friend or carer complete the survey for me?
Yes, individuals who care for someone with Marfan or Loeys-Dietz are eligible to take part and can answer the survey based on the view of the person with Marfan or Loeys-Dietz Syndrome.
What will taking part in the survey involve?
If you decide to take part, you will be able to complete our survey online using the link above on your own device. The survey should take about 20 minutes to complete. If you have any questions or require assistance to complete the survey, please contact the Marfan Trust using the contact details below.
If you start the survey and decide you would like to finish at a later time, you should be able to leave the webpage and revisit to the point of completion if you have cookies turned on in your browser settings. To pick up where you left off, you will have to access the survey via the same device and browser.
What will happen to my answers?
We will use the answers you provide, combined with the answers of other people, to understand people’s experiences of living with Marfan and Loeys-Dietz syndrome and the care and support that they receive. This will be used to highlight where improvements are needed.
- Your views will be kept entirely confidential. No identifying information (such as names) will be shared with anyone who provides your care and treatment.
- Picker will report views anonymously, ensuring no one can link your responses or comments to you.
- Your responses will not affect your healthcare or rights to healthcare in any way.
- Picker will use your personal data and responses solely for the purposes of this research.
- All your personal data used and collected for this survey will be stored and processed in the United Kingdom. Picker complies with the UK General Data Protection Regulation (UK GDPR), the Data Protection Act 2018 and the Market Research Society’s (MRS) Code of Conduct by maintaining certifications from the International Standardisation of Organisations. Any sensitive or confidential material is stored securely in line with our data protection policy. Picker’s Privacy Notice is available to read here: https://picker.org/privacy-notice-for-online-surveys/.
How will the results from the survey be used?
The survey results will be presented in a report published by the Marfan Trust and Picker. Your personal information will not be included in the report, and the results will not be used to identify you. Anonymised freetext comments may be used in the presentation of the results.
Any further questions?
If you have any queries or require any further information about the survey, then please contact the Marfan Trust by: Email: info@marfantrust.org or Phone: 0333 011 5256.