Share your experiences of care

Who are we?

The research is being carried out by Picker, an independent not for profit health and social care research organisation (https://picker.org). Picker is working with the Marfan Trust to understand the care experiences of people diagnosed with Marfan Syndrome (MFS) or Loeys Dietz Syndrome (LDS).

What are we doing?

Picker, on behalf of the Marfan Trust, is developing a survey that will focus on the experience of people living with MFS or LDS and/or their families. We want to understand experiences of diagnosis, treatment, care and support, and any impacts of living with MFS/LDS.

• one-hour interviews via phone or video call to understand people’s experiences of living with MFS and LDS and the care/treatment received (interviews during June 2025)
• one-hour interviews via phone or video call to test the survey questions to understand how to improve the questionnaire (interviews during July/August 2025)

Who can take part?

We would like to speak with:

• people aged 16 and over who have Marfan Syndrome or Loeys Dietz Syndrome and live in the UK
• parents and/or carers of those with Marfan Syndrome or Loeys Dietz Syndrome and live in the UK

What will happen if I take part in an interview?

We will schedule a convenient time to talk with you about your views and experience. You can provide your feedback by either a video call or by telephone. We will ask you which method you would prefer to use. If you take part, we will ask you to complete an online consent form before the call. This will include consent to audio record the interview.

The interview will last for about an hour. If at any time you do not want to answer a question, you do not have to. You are encouraged to discuss as much as you want but do not need to share anything that makes you uncomfortable.

You will be provided with a £30 Amazon or Love2Shop voucher after the interview to thank you for your time.

Do I have to take part?

No, participation in this research is entirely voluntary. It is up to you whether or not you take part. You can decide not to take part or withdraw at any time – even after the interview has started, without giving a reason.

If you decide not to take part, this will not affect the care you receive in any way. Your care providers will not know who has taken part.

What will happen to the information that I share?

We will use the information from your interview to help develop a survey about the experiences of people with Marfan or Loeys Dietz Syndrome.

• Your views will be kept entirely confidential. No identifying information (such as names) will be shared with anyone who provides your care and treatment or anyone at the Marfan Trust.
• The feedback you provide will be looked at in full by the researchers analysing the data. No identifying information (such as names) will be shared with anyone other than the research team at Picker involved in this project. Picker will report views anonymously, ensuring no one can link your comments to you (including any quotes used in the report).
• Nothing you say will 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.

Your personal details (name and contact information) will be kept securely until the interviews have been carried out. Then, they will be securely destroyed. If you take part in an interview, the recording will be securely stored and securely destroyed at the end of the project.

Any further questions?

If you have any queries or require any further information, then please contact us by:

Email: take_part@pickereurope.ac.uk or Freephone: 0800 1975 273.

Thank you for taking the time to read this information sheet.