The survey is exploring mood, memory and cognitive functioning through some basic memory recall tasks. Any adult (over 18 years old) with a clinical diagnosis of X linked ichthyosis or Ichthyosis vulgaris can take part. The survey takes 15-20 minutes and can be completed on any internet device e.g. phone, laptop, tablet. The link to the survey is https://cardiffunipsych.eu.qualtrics.com/jfe/form/SV_9oznFLrKhcaFtYi

Recent findings in animals have indicated that biological processes associated with the skin condition ichthyosis may also be associated with effects on memory, other cognitive functions, and mood. The effects of genetic changes associated with ichthyosis on memory, cognition and mood in humans has yet to be investigated. Our study aims to address this gap in knowledge.

We are inviting you to take part in this study as part of our sample of adult (over 18 years old) males with X linked ichthyosis, female carriers of X linked ichthyosis, and adults with ichthyosis vulgaris from around the world. If you take part, we will ask you to complete a short (20-30mins) online survey asking for a brief medical history, and details regarding your current mood and wellbeing. This survey will also ask about how satisfied you are with your current memory abilities, and any memory strategies you use to help. You will also take part in a short activity to test your short-term memory, in which you will be asked to recall a list of words and pictures.

Any information that you provide will be anonymous (i.e. your name will not be linked to the information and data you provide and will not be available to the research team). You will be identified solely with a unique participant code and you will not be given feedback on your individual outcomes. The results of this survey will not provide a basis from which to diagnose or treat a clinical condition or associated symptoms.

Your participation in this study is voluntary, and you are free to withdraw at any time and for any reason; however, once you have submitted your answers, as they are anonymous, they will not be able to be retrieved or deleted.

If you feel uncomfortable answering any questions, please feel free to omit them.

You will be provided with further information upon completion of this study, and you will have the opportunity to register to take part in follow-up studies examining memory using online neuropsychological tests by leaving your e-mail address. If you decide to register your interest in further work, you will be asked to generate a code unique to you so that your current and future responses can be linked.

You will not be given feedback on your individual study scores, but the results of the study (as group averages) will be disseminated by e-mail to participants, via social media and relevant charity websites, or via publication in an academic journal.

The study has been ethically reviewed by Cardiff University School of Psychology Ethical Review Panel. If you have any concerns or issues related to the study then please contact: [email protected], telephone (number) or write to the Secretary of the School of Psychology Ethical Review Panel, School of Psychology, Cardiff University, Park Place, Cardiff, UK, CF10 3AT.

If you require further information about the study, please contact us: Ms Georgina Wren ([email protected]) or the primary supervisor for this project, Dr William Davies ([email protected]) at School of Psychology, Cardiff University, United Kingdom