Page 1: Page 1 - Participant Information Sheet for Adults

Living with Cutaneous Porphyria


University of Dundee School Research Ethics Committee Approval Number: UoD-SHSL-PSY-STAFF-2023-143

You are invited to participate in a research study about the experience of living with cutaneous porphyria. To participate you must be aged 18 or above. Please let the researcher who gave you this information know if anything is unclear or you have any questions.

This study uses resources provided by the University of Dundee, and it is conducted by Prof Fabio Sani, a social and health psychologist from the Psychology Division at the University of Dundee: It is hoped that findings will advance understanding of what it is like to live with cutaneous porphyria, which in turn may lead to improved care for people suffering from this disease.

You have been invited to take part because you have been diagnosed with cutaneous porphyria.

You will complete a survey online, which involves answering some questions. Nine open-ended questions will concern your experience of living with porphyria. There will also be some close-ended questions assessing your mental health status. The length of the study will largely depend on how much you are willing to write in the open-ended questions. However, it is estimated that most participants will spend anything between 15 and 20 minutes to complete the study.

As you will be asked about your difficulties with living with cutaneous porphyria, there is a small risk that answering the questions will make you feel upset. Due to this, you will be provided with contact details for the Samaritans at the beginning and end of the survey.

All data will be collected anonymously and stored in a secure password computer, with only the lead researcher having access to it. No identifying information will be collected. The data will be held indefinitely, as they could be used for future research. The results of this study, including direct quotes from your own answers to the open-ended questions, might be reported in journal articles, conferences, and information material. However, we will ensure that quotes that might give some indications about the identity of the participant will not be used.

Participation in this study is voluntary and you may withdraw at any time by closing the online questionnaire, without giving an explanation. Data collected up until the point of withdrawal will be erased. However, after data collection is complete it will not be possible to withdraw from the study as the data is held anonymously.

To participate, please read and confirm the following:

1.1. I have read and understand the Participant Information Sheet. Required
2.2. I have been provided with contact details to use, if I want to ask a question related to the project. Required
3.3. I understand that all information will remain confidential. Required
4.4. I understand that all information will be stored securely and anonymously and might be used for future research. Required
5.5. I agree that my participation in this study is completely voluntary, and I may withdraw at any time before the survey is completed. Required
6.6. I understand that the study involves a small risk, and that therefore I have been provided with organisations to contact if I feel upset. Required
7.7. I understand that the results of this study, including direct quotes from my own answers to the open-ended questions, might be reported in journal articles conferences, and information material. Required
8.8. If you understand and agree to all the above and still wish to participate in this study, please select the "Yes, I want to participate" box and click "Next" to continue to the questionnaire. Required