Have you had or been offered Whole-Body MRI screening? Have you been offered it and declined?
We are seeking individuals who have had or been offered Whole-Body MRI (WB-MRI) screening in the UK.
If you have a clinical and/or genetic diagnosis of Li-Fraumeni Syndrome, are over the age of 18, and are willing to help us understand more about your experiences with WB-MRI screening please contact Pan for more information.
Claire Jordaan as part of her MSc in Genetic and Genomic Counselling at Cardiff University is interested in the experiences of individuals with a clinical and/or genetic diagnosis of LFS who have been offered WB-MRI screening. This includes those who have had a clinical diagnosis of LFS based on family history and personal cancer history, or have been found to have a gene change that would make them eligible for WB-MRI screening. You will be eligible for this study only if you have been offered WB-MRI screening (whether you have declined, had, or are considering it). The research involves an interview with Claire lasting approximately 30-45 minutes by phone or via weblink to explore your feelings regarding the benefits or disadvantages of receiving it, your experiences with WB-MRI screening, and what factors have played a role in this.
Her aim is to help guide healthcare professionals in their conversations with people with Li-Fraumeni Syndrome who are considering WB-MRI screening.
If you are interested, please contact Pan Pantziarka (details below). The George Pantziarka TP53 Trust will send you a Participant Information Sheet outlining the study, as well as a consent form. At this initial enquiry stage none of your personal information will be shared with the researchers without your agreement.
Chair/Co-Founder of the George Pantziarka TP53 Trust