Consultations and Surveys
Consultations and Surveys
Please be aware that we do not necessarily agree with the requests posted here. You may wish to see our advice checklist before deciding to respond or participate.
Survey aim: To better understand the unmet needs of patients with neuromuscular conditions and contribute towards the development of a Neuromuscular Complex Care Centre (NMCCC) in the northeast of England.
In 2014, the UK’s first Neuromuscular Complex Care Centre was launched at Queens Square, UCL London, with the aim to improve quality of care, provide better coordinated care, reduce the number of unplanned admissions, and ultimately reduce costs. Following the success of this unit, the John Walton Muscular Dystrophy Research Centre, Newcastle Hospitals NHS and Foundation Trust and Newcastle University are looking to establish a similar Neuromuscular Complex Care Centre in the North East. They are therefore running this survey to better understand the unmet needs of those affected by neuromuscular conditions.
Who can complete the survey:
- People who have SMA, or other neuromuscular conditions
- People of all ages
- Affected individuals, parents, guardians, unpaid carers
Deadline to share your views is 31st August 2023.
To find out more, please download the poster below or email: Grecia Alvarez
25th July 2023
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.
13 June 2023
Pamela Appleton, a postgraduate Masters student at the University of Plymouth, is exploring the impact of disease modifying therapies on quality of life and daily activities in adults with Spinal Muscular Atrophy. The aim of her study is to understand the lived experience of treatment as we know that some of the outcome measures are not able to adequately capture the full impact of treatment. She will be collecting this information through a series of online focus groups.
Anyone who can meet the following conditions is invited to take part:
- You are at least 18 years old,
- have received either Risdiplam or Nusinersen,
- live in the UK,
- are able to join an online group.
Recruitment is open from now until the last focus group has been completed (23rd August) or until sufficient responses have been received. Focus groups will be run on various dates in August 2023.
Find out more about the research project, including what’s involved in taking part, by clicking on the link below:
24 May 2023
Adelphi Values is conducting this study, on behalf of a pharmaceutical company, who wish to further understand meaningful change on the Revised Hammersmith Scale. Participants will receive £100/$110 per interview completed.