Do you have a child who has been diagnosed with SMA within the last five years, or are you an adult whose SMA symptoms started in your teenage or adult years? If so, researchers at the University of Warwick would like to hear your views on newborn screening for SMA in the UK!
What they say:
“We are Felicity Boardman and Corinna Clark, researchers at the University of Warwick who are conducting research into the views of the SMA Community towards newborn screening for SMA in the UK. We would particularly like to speak to parents of children diagnosed with SMA within the last five years and people whose symptoms started when they were teenagers or adults. If you have another Type of SMA, or your child was diagnosed more than five years ago, we would still like you to participate in this study by completing our survey when it is released in the coming months.
The UK National Screening Committee (UK NSC), the body who make recommendations to Government on screening policy, are currently reviewing the evidence on newborn screening for SMA to decide if it should be offered nationally. The results of this study will be presented alongside other forms of evidence to assist the UK NSC in their decision-making. Assessing the acceptability of a screening programme is one of the key criteria they look at.
We are looking for people who are happy to be interviewed (online, over the phone or in-person) about their views on SMA newborn screening. If you are interested in taking part, you will be sent further information about the study to help you decide. Please note, you do not need to know anything about the current or proposed screening policy before the interview. The interviews will last between 30 to 60 minutes and as a thank you for taking part we will give you a shopping voucher worth £20.
Eligibility: we are looking for people living in the UK who are over 18 years old, and who are parents of a child recently diagnosed (within the last five years) with any Type of 5q SMA, or adults living with later onset SMA (their symptoms started when they were teenagers or adults).
We are expecting to finish our interviews by the middle of September, so a quick response is appreciated”.
How to take part:
please contact the researchers at: email@example.com to receive information on the study and to ask any questions you may have about the study. There is also a webpage if you would read about the project and the researchers.