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Introduction

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Question

Cystic Fibrosis Screening Survey (UK)

Welcome to the Cystic Fibrosis 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 cystic fibrosis (or who have a relative with the condition) towards the possibility of screening the population for cystic fibrosis, either pre-conceptually (before a pregnancy is conceived) or prenatally (during pregnancy). 'Screening' refers to the identification of cystic fibrosis in the whole UK population, not just within families already known to be affected by the condition. Whilst newborn screening for cystic fibrosis was introduced in 2007, there is currently no screening programme in place that can detect cystic fibrosis carriers and foetuses before or during pregnancy. A screening programme would mean that people without a family history of cystic fibrosis would be offered the same opportunities to undergo pre-conception or prenatal genetic screening that are currently only offered to affected families.

Why is the study being done? At present, very little is known about how families currently living with genetic conditions such as cystic fibrosis feel about the possibility of a pre-conception or prenatal genetic screening programme. This survey is designed to address this gap in understanding. The outcome of this survey will be submitted to any screening policy reviews for cystic fibrosis screening carried out by the UK National Screening Committee (the advisory body to government on issues related to screening). To develop this survey, 18 in-depth interviews were undertaken with people who either have cystic fibrosis, or have it in their family. These interviews gave us a picture of the sorts of views people living with cystic fibrosis have on screening, and these views 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 cystic fibrosis in your family, or have it 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 cystic fibrosis, regardless of whether you are biologically related, and regardless of whether your relative with cystic fibrosis is still living, or has died.

How do I participate? Simply fill in the Cystic Fibrosis 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 screeningsurvey@warwick.ac.uk 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 Cystic Fibrosis Trust’s newsletter and also used for conference presentations (academic, professional and patient). It will also be submitted as research evidence to any policy review of cystic fibrosis screening conducted by the UK National Screening Committee. Upon completion of the research project, the anonymised data from this survey will 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 (screeningstudy@warwick.ac.uk / 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 which may identify you (e.g. your name/address) will be asked for, but you will be asked for background information about yourself. 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) 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 6/6/18 (REGO-2017-1910 AMO5).

Are there any disadvantages to taking part? Some people may find the topic of screening for cystic fibrosis upsetting. Should the completion of this survey raise any issues for you which you would like support with, or further information on, please contact your GP or the clinician who ordinarily treats your cystic fibrosis.

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 House, University of Warwick, Coventry CV4 8UW. Or email: researchgovernance@warwick.ac.uk

If you have any comments or queries about the survey, or to request paper copies, please contact us at screeningstudy@warwick.ac.uk or complete the comments box at the end of the survey.

 

Thank you!