Haemophilia Screening Survey (UK)
Welcome to the Haemophilia Screening Survey (UK). This survey is part of a research project being conducted on pre-conception genetic screening ( http://www.warwick.ac.uk/imagining_futures ). This survey has been designed to explore the views of people living with haemophilia or other bleeding disorders (or with such a condition in their family) towards the possibility population screening. 'Screening' refers to the identification of haemophilia/bleeding disorders (both those with the condition and/or carriers) in the whole UK population, not just within families already known to be affected. A screening programme would therefore mean that people with no history of haemophilia/bleeding disorders could be offered the same access to genetic testing as already affected families.
Why is the study being done? At present, very little is known about the way families living with genetic conditions such as haemophilia feel about screening. This survey has been 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, 20 in-depth interviews were conducted with people who either have haemophilia or a bleeding disorder themselves, or have one in their family, to gain an understanding 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 either haemophilia and/or another 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 haemophilia or a bleeding disorder, regardless of whether you are biologically related, and regardless of whether your relative with the condition is living, or has died. We also still want to hear from you, if you or your relative has received contaminated blood and consequently have been diagnosed with an additional condition, such as HIV or Hepatitis C.
How do I participate? Simply fill in the Haemophilia Screening Survey (UK) and submit your answers at the end of each section by clicking the 'continue' button in the bottom left hand corner of the screen. The survey takes about 15-20 minutes to complete. Please note, once you have submitted your answers at the end of each section, you will not be able to go back and edit them. Please complete the survey as an individual, rather than as a couple or family, as everyone feels differently about screening and it is important to get an accurate picture of the range of views on this topic. If you prefer, you may complete a paper version of this survey by emailing firstname.lastname@example.org and asking for a copy to be posted out to you. We encourage you to distribute this survey to other members of your family or your friends who are eligible to take part.
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 screening for haemophilia/bleeding disorders conducted by the UK National Screening Committee. At the end of the research project, the anonymised data will also be archived with the UK Data Service (https://www.ukdataservice.ac.uk/) so that in the future, other researchers may make use of it. If you do not want your anonymised survey answers to be archived, please contact us by email or telephone (email@example.com / 02476151291) BEFORE completing the survey.
What if I change my mind? If you start the survey and decide you do not want to continue, simply close the browser window and your answers will not be submitted. However, once a completed survey has been submitted, 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 that may identify you (e.g. your name/address) will be asked for, but you will be asked for background information about yourself (such as gender, ethnicity etc.), as well as information on the type of bleeding disorder affecting your family. This is to ensure that we get a clear understanding of who has responded. 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) who are based, 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 (REGO-2017-1910AM02).
Are there any disadvantages to taking part? Some people may find the topic of screening upsetting. Should the completion of this survey raise any difficult issues for you that you would like support with, or to discuss further information, please contact The Haemophilia Society ( firstname.lastname@example.org 0207 9390780), the clinician who treats your haemophilia / 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: Jane Prewett, Head of Research Governance, Research & Impact Services, University of Warwick, Coventry, CV4 8UW. Jane.Prewett@warwick.ac.uk
If you have any comments or queries about the survey, or to request paper copies, please contact us at email@example.com or complete the comments box at the end of the survey.