There are several different ways that you can get involved with the Imagining Futures project:
What is an Expert Review Panel?
In order to ensure that those living with SMA are included not only in the research itself, but also in the running of the project, an ‘expert review panel’ made up of between 5 and 10 people living with SMA is being set up, to meet every six months for the duration of the project (three years), with no more than six meetings in total. At the meetings, panel members give feedback on different aspects of the project: for example, the types of questions to be included in the survey or interviews, the analysis of the data and the methods of distributing the research findings to interested parties upon completion of the project.
Is it for me?
No prior experience of being involved with a research project is required, however those individuals who are able to commit to a meeting every six months will be prioritised for membership to the panel. Meetings will be held at Warwick Medical School, Coventry, and whilst attendance at the panel in person is preferred, if this is not possible, there may be opportunities to participate via telephone, skype or email. Participants will be paid at a rate of £15 per hour of meeting in recognition of their contribution to the panel, and reimbursement of travel costs can usually be offered (please contact Dr Felicity Boardman on an individual basis to discuss your travel needs).
Dr. Boardman is interested in appointing individuals with different types of SMA in their family (I-IV) to the panel, as well as individuals who have come to know SMA in contrasting ways (e.g. have it themselves or are the parents/siblings/aunts/uncles/cousins/grandparents/ spouse/adult child of someone who does), in order to include a range of perspectives. If you cannot be appointed to the panel, but are interested in being involved in the research, it may be possible for you to participate in the research in other ways, for example, through completing a research interview and/or the survey later in the project, and you may also get involved with the project’s webpage where a dedicated forum will be set up for discussion around screening issues.
The expert reference panel is designed to be a safe place for people to exchange ideas and explore their thinking about genetic screening for SMA and to consider how this relates to the research project, ‘Imagining Futures’. Not everyone will view screening in the same way and so you are encouraged to think carefully about how you might feel about encountering views different to your own at the panel before you join, and how you might respond. It is important that everyone who attends is given the opportunity to express their own perspectives and for their feedback to be incorporated into the research processes.
How can I join the expert review panel?
For further information, or to express an interest in joining the expert review panel, please contact Dr. Felicity Boardman at
firstname.lastname@example.org or by telephoning 024 761 51291.
You may also follow the development of the project through the twitter feed: https://twitter.com/ImaginingFuture
+ Take part in a research interview or survey
If you would like to be involved with this project through a research interview, please contact the researcher, Felicity Boardman to see if you are eligible and for details about how they are undertaken.
If you are not eligible to be interviewed you may leave a message or comment on the project comments page.
Information about the conditions being studied
- About Cystic Fibrosis
- About Fragile X
- About Haemophilia
- About Spinal Muscular Atrophy
- About Thalassemia
- About Down's Syndrome
- Current UK screening policies
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