Do you have a child who has been diagnosed with SMA because of having symptoms (not from screening) within the last three years? If so, researchers at the University of Warwick and King’s College London would like to hear your views on newborn screening for SMA in the UK.
What they say:
We are Felicity Boardman, Corinna Clark (University of Warwick) and Jane Chudleigh (King’s College London). We are researchers who are doing research into the acceptability of newborn screening for SMA. This is part of the In Service Evaluation (ISE)for SMA newborn screening for the UK National Screening Committee. We want to gather the views and experiences of parents of children diagnosed with SMA.
We would like to speak to parents of children (under 18 years of age) who have been diagnosed with SMA Type 1, 2 or 3 within the last three years, because their child developed SMA symptoms. We will also be speaking with parents whose children are diagnosed because of newborn screening.
The ISE is similar to a pilot study. Its purpose is to gather information on how SMA screening might work in practice within the NHS. Exploring the acceptability of the screening programme, and the experiences of parents whose children are diagnosedwith SMA, either with or without newborn screening, is an important aspect of this evaluation.
We are looking for parents who are happy to be interviewed. Interviews are usually done online, but can be over the phone or in-person (England only). We would like to understand parents’ experiences of their child’s diagnosis (and treatment, ifrelevant) and their views on SMA newborn screening.
We would like parents to take part in four interviews over 18 months, to explore how their views and experiences might change over time. The first interview will take around an hour, whereas interviews done 6, 12 and 18 months later are likely be shorter. As a thank you for taking part we will give you a shopping voucher worth £20 for every interview you take part in.
If you are interested in taking part, please contact us and we will send you more information about the study to help you decide. Please note, you do not need to know anything about screening policy or the ISE.
Eligibility: we are looking for parents (biological or otherwise) and guardians of children (under 18 years old) recently diagnosed (within the last three years) with SMA type 1, 2 or 3, living in the UK. Parents must be over 18 years old to take part.
How to take part:
Please complete this form and Register your interest here > or contact the researchers at: smascreening@warwick.ac.uk to receive information about the study and to ask any questions you may have.
There is also a webpage if you would like to read about the project and the researchers involved.
