Researchers at Queen’s University Belfast, invite you to take part in an online research study investigating the impact of living with a pre-malignant condition. Please take time to read through the following information about the study and what it involves.

Please see the new link to our survey at http://go.qub.ac.uk/QUBPIP2 . We apologise for the inconvenience.

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What is the purpose of this study?

We are interested in determining the effect, if any, that receiving a diagnosis of the below listed medical conditions has on people’s lives. This research will try to inform doctors on how to best help patients dealing with these conditions. Under the supervision of Dr Lesley Anderson, Mr Blain Murphy, a PhD student at Queen's University Belfast, will carry out this study as part of his PhD programme.

Medical Conditions such as:

Blood related: Monoclonal B cell lymphocytosis, MGUS (monoclonal gammopathy of undetermined significance), Preleukaemia/Preleukemia, SMM (smouldering/smoldering multiple myeloma).

Breast and Gynaecology related:
 
Cervical dysplasia, CIN (cervical intraepithelial neoplasia), DCIS (ductal carcinoma in situ), LCIS (lobular carcinoma in situ), Uterine cervix carcinoma in situ, VAIN (vaginal intraepithelial neoplasia), VIN (vulvar intraepithelial neoplasia). 

Gastric conditions: Barrett's Esophagus/Oesophagus, Colorectal polyps, Gastric conditions (gastritis, atrophy, intestinal metaplasia, Autoimmune metaplastic atrophic gastritis).

Male-Specific Organs/Urology: 
PIN (prostate intraepithelial neoplasia), Testicular intraepithelial neoplasia.

Oral related: Erythroplakia, Leukoplakia, Erythroleukoplakia, OLP (oral lichen planus).

Other conditions: Actinic Keratosis (skin), Dyskeratosis congenita (bone marrow). 
Do I have to take part?

No. It is up to you whether or not you take part.  If you decide to take part, you can change your mind and withdraw at any stage. Any data you have completed will be retained by the research team. You do not need to give a reason for withdrawing and this will have no effect on the standard of care you receive from your healthcare team.

What will happen if I take part?

If you decide to take part, all you need to do is click on the link below.  You will then be taken through a series of questionnaires. These questionnaires are designed to capture information relating to your current quality of life and the impact, if any that your medical diagnosis/conditions has on your daily life. This should take no longer than 20 minutes to complete.

What are the risks/benefits of the study?

We do not anticipate that you will experience any negative effects from taking part in this study.  There is a small risk that you may become upset while completing the questionnaires. If this happens, we recommend that you seek support from the patient support services that are provided at the end of the survey and on our study Facebook page (www.facebook.com/QUBPIPStudy/). The findings from this study may assist healthcare providers provide better support to patients diagnosed with these medical conditions in the future.

Who can I talk to about this study?

If you have any issues/queries regarding this research study, you can contact the chief investigator, Dr. Lesley Anderson (l.anderson@qub.ac.uk). If your concerns are not addressed, you can contact Queen’s University Belfast’s Research Governance team (researchgovernance@qub.ac.uk).

Will my participation be confidential?

All data will be anonymised and confidential. Any data you have inputted will be kept for up to 5 years and may be kept in servers outside the EU. As the survey is anonymous, we will not be able to remove your survey responses at a later date, should you decide that you no longer want to participate

What will happen to the results of the study?

This work will be used in a PhD thesis and will be submitted for publication in an medical/scientific journal. A summary of the results will be circulated to relevant patient websites and social media accounts involved in cancer research.  All quotes will be anonymised.

This study has been reviewed by the NHS Research Ethics Committee (UK) (Ref:17/EM/0390)
Where can I find more information on my medical condition?

For more information, the best place to get advice is with your private doctor/GP/ Family doctor. Other places with good information are:

http://www.macmillan.org.uk/information-and-support/diagnosing/causes-and-risk-factors/pre-cancerous-conditions

https://www.cancerresearchuk.org/ 

http://www.cancer.ca/en/cancer-information/cancer-type/see-all/?region=bc

Thank you for your interest in our research and for taking the time to read through this information.

By indicating YES below, you consent to participate in the study on the basis that:


* 1. You have been informed about the study and what the study involves.

You may stop the study at any time.

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