Exploring Iron Deficiency in Pernicious Anaemia

INFORMED CONSENT FORM

Thank you for considering taking part in this research.
Please complete this form after you have read the Information Sheet and/or listened to an explanation about the research.

Title of Study: Exploring Iron Deficiency in Pernicious Anaemia: A Survey of Diagnosis, Treatment and Management Practices

University of Surrey Ref: 0499

The person asking for your consent must explain the project to you before you agree to take part. If you have any questions about the Information Sheet or their explanation, please ask the researcher before you make your decision. You will be given a copy of this Consent Form and the Information Sheet to keep and refer to at any time.

By initialling each box, you are consenting to this part of the study. Any un-initialled boxes will mean that you DO NOT agree to that part of the study and this may mean you are ineligible for the study.

Please fill out your name and email address. This email address will be used to send you your personal ID number and a link to the online survey.

iron study

Taking part in the study

I confirm that I have read and understood the information sheet dated [10/09/24 v1.0] for the above study. I have had the opportunity to consider the information and asked questions which have been answered satisfactorily.
I understand that my participation is voluntary and that I am free to withdraw at any time during the study without giving any reason. Furthermore, I understand that data already collected can only be withdrawn until the end of the data collection period [30/06/25].
I understand that information I provide may be subject to review by responsible individuals from the University of Surrey and/or regulators for monitoring and audit purposes.
I understand that information I provide will be used in various anonymised outputs, including reports, publications, presentations and websites.
I understand that my personal data, including this consent form and any other information that links me to the research data, will be stored securely in line with the University's data protection guidelines. This data will be retained for a period of 10 years after which it will be securely destroyed unless further retention is required by law or for valid research purposes, which will be subject to additional ethical review. Only the immediate research team and chief officer at the Pernicious Anaemia Society will have access to this data. The data will be used solely for the purposes of this study and will not be linked to other datasets without my explicit additional consent or unless it is done in a de-identified format that does not disclose my personal identity.
I understand any personal contact details collected about me, such as my email address, will not be shared beyond the study team.
I agree to take part in this study.
I give permission for my de-identified data to be archived [in an external data archive (e.g. UK Data Archive] and shared anonymously with other researchers, in order to carry out future research.
I consent to my identifiable [personal data/special category data] to be deposited/stored for similar future ethically approved research studies and I understand that I can withdraw this consent at any time without giving a reason.
I agree for my personal contact details to be stored by the research team who may wish to invite me to participate in follow-up studies to this project or in future studies being conducted at the University of Surrey and I understand I can withdraw this consent at any time.

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