This page gives you details of the SMA Screening Survey (UK) which launched in early autumn 2014 and closed June 30th 2015. It constitutes phase II of the Imagining Futures research project. You can read a report on the findings of the survey here.
**PLEASE NOTE THIS PAGE IS FOR INFORMATION ABOUT THE SURVEY ONLY. THE SURVEY IS NOW CLOSED. YOU CAN VIEW A PDF OF THE SMA SCREENING SURVEY (UK) AT THE BOTTOM OF THIS PAGE. **
What is the SMA Screening Survey (UK)?
The SMA Screening Survey (UK) has been designed to explore the views of people living with SMA (or with SMA in their family) towards the possibility of screening for SMA. 'Screening' refers to the identification of SMA (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 SMA in their family would be offered the chance to undergo genetic testing for the condition.
Why is the SMA Screening Survey (UK) being done?
In December 2013, after a national consultation, the UK National Screening Committee (the organisation that advises the government on issues related to screening) concluded that screening for SMA should not be offered at this time. It was noted in their consultation report that very little is known about how families currently living with SMA would feel about a national screening programme for SMA. This survey is designed to address this gap in understanding, and the outcome of the survey will be submitted to the UK National Screening Committee in their next review of SMA screening policy (around 2016). In order to develop this survey, 36 in-depth interviews with people who either have SMA themselves, or have SMA in their family, were conducted 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.
Who is being invited to complete the SMA Screening Survey (UK)?
You are being invited to complete this survey if you are aged over 18, live in the UK and have any form of SMA in your family (including its variant forms, (e.g. SMARD, Kennedy's, Spinal Bulbar Muscular Atrophy etc.) or have the condition yourself. I am 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 SMA, regardless of whether you are biologically related, and regardless of whether your relative with SMA is still living, or has died.
What will happen to my information if I decide to participate?
The anonymised summary results of this survey (not individual data) will be published in academic journals, written up as a research report for SMA Support UK's (formerly the Jennifer Trust) 'Inspirations' newsletter, as well as the UK SMA Patient Registry newsletter and used for conference presentations (academic, professional and patient). It will also be submitted as research evidence to the UK National Screening Committee in their next review of the policy on screening for SMA in the UK. Upon completion of the Imagining Futures research project, the anonymised data from this survey will be archived with the Economic and Social Data Service 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 (SMAscreeningsurvey@warwick.ac.uk)BEFORE completing the survey. As the survey is anonymous, once your answers have been submitted, it will not be possible to withdraw them from the study as it will not be possible to link you back to your particular survey answers.
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 SMA 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.
How do I participate?
If you would like to complete the SMA Screening Survey (UK), please follow the link at the bottom of this page and you will be taken to the survey. Alternativley, the survey is available in paper format. To request paper copies, please contact us at the SMA Screening Survey Resource (SMAscreeningsurvey@warwick.ac.uk) and copies will be posted out to you. The survey takes about 15-20 minutes to complete.
Please complete it 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.