Welcome to the Haemophilia Screening Survey (UK)

This survey is part of a research project called 'Pre-conception genetic screening for conditions of uncertain or variable prognosis: social and ethical implications’' (http://www.warwick.ac.uk/imagining_futures). This survey has been designed to explore the views of people living with bleeding disorders such as haemophilia, (or with such a condition in their family) towards the possibility of screening for bleeding disorders. 'Screening' refers to the identification of bleeding disorders (both those with the condition and/or carriers) in the whole UK population, not just within families
already known to be affected by the condition. A screening programme would mean that people with no history of a bleeding disorder in their family would be offered the same opportunity to undergo genetic testing for the condition as currently affected families.

Why is the study being done?

At present, very little is known about the way families currently living with genetic conditions such as haemophilia and other bleeding disorders would feel about a national screening programme . This survey is designed to address this gap in understanding. The results of this survey will be submitted to any future screening policy reviews for haemophilia (or similar bleeding disorders) carried out by the UK National Screening Committee (the advisory body to government on issues related to screening). In order to develop this survey, 18 in-depth interviews were conducted with people who either have a bleeding disorder themselves, or have one in their family, to get a picture of the sorts of views people have on screening. The wide range of views that emerged from these interviews have been incorporated into the survey.

Why am I being asked to take part?

You are being invited to complete this survey if you are aged over 18, live in the UK and have a bleeding disorder in your family or have one yourself. We are interested to hear from a range of family members (e.g. aunts/uncles, cousins, siblings, grand-parents, step- and half-relatives) or anyone who considers themselves a 'family member' of someone with a bleeding disorder, regardless of whether you are biologically related, and regardless of whether your
relative with the bleeding disorder is living, or has died. We also still want to hear from you if you, or your relative with a bleeding disorder has previously received contaminated blood via the NHS and consequently has a diagnosis of another condition alongside their bleeding disorder, such as HIV or Hepatitis C.

How do I participate?

Simply fill in the Haemophilia Screening Survey (UK) and return it in the pre-paid envelope, or to the address found at the back of this survey. The survey takes about 15-20 minutes to complete. Please complete the survey as an individual, rather than as a couple or family, as everyone feels differently about screening (even within couples and families) and it is important to get an accurate picture of the range of views on this topic. If you prefer, you may complete this survey online at: http://www.warwick.ac.uk/haemophiliascreeningsurvey

What will happen to my information if I participate?

The anonymised summary results of this survey (not individual data) will be published in academic journals, written up as a research report for The Haemophilia Society’s newsletter and also used for conference presentations (academic, professional and patient). It will also be submitted as research evidence to any policy reviews of bleeding disorder screening conducted by the UK National Screening Committee. Upon completion of the this research project, the anonymised data will be archived with the Economic and Social Data Service (https://www.esds.ac.uk/) so that in the future, other researchers may make use of the data. If you do not want your anonymised survey answers to be archived, please contact us by email or telephone (screeningstudy@warwick.ac.uk/02476 151291) BEFORE completing the survey.

What if I change my mind?

If you start the survey and decide you do not want to continue for whatever reason, simply do not return it. However, once a completed survey is returned, it will not be possible to withdraw it from the study. This is because the survey is anonymous and therefore it will be impossible to link an individual back to their survey in order to remove it from the study.

Will my taking part be kept confidential?

All data collected from this survey will be held anonymously and securely using data encryption software. No data which may identify you (e.g. your name/address) will be asked for, but you will be asked for background information about yourself, as well as the type of bleeding disorder affecting your family. This is in order that we can get a clearer understanding of the backgrounds of the people responding. All data will be handled in strict accordance with the Data Protection Act 1998.

Who is conducting the research?

This research is being conducted by Dr. Felicity Boardman (Assistant Professor) and Dr. Rachel Hale (Research Fellow), at Warwick Medical School, and is funded by the Wellcome Trust. The research was given a favourable opinion by Warwick's Biomedical and Scientific Research Ethics Committee on 16th November 2017.

Are there any disadvantages to taking part?

Some people may find the topic of screening for bleeding disorders distressing. Should the completion of this survey raise any issues for you which you would like support with, or further information on, please contact The Haemophilia Society, the clinician who treats your bleeding disorder or your GP.

What if there’s a problem?

Any complaint about the way you have been dealt with during this study will be properly addressed by a person who is independent of the study. Please address your complaint to: Deputy Director/ Head of Research Governance, Research & Impact Services, University of Warwick, Coventry, CV4 8UW. researchgovernance@warwick.ac.uk
If you have any comments or queries about the survey, or to request further paper copies, please contact us at screeningstudy@warwick.ac.uk or complete the comments box at the end of the survey. You may want to tear off and keep the cover page of this survey before returning it in order to retain the project details. Alternatively, email (screeningstudy@warwick.ac.uk) and ask for this information to be posted or emailed to you.
Thank you!