Participant Information Sheet (PIS)
You are invited to participate in a research study being conducted by Dr Gita Ramdharry (National Hospital for Neurology & Neurosurgery, UCLH), Prof Monica Busse (Cardiff University), Dr Valentina Buscemi, Prof Annette Boaz, Prof Helen Dawes, Prof Thomas Jaki, Prof Fiona Jones, Prof Jonathan Marsden, Prof Rebecca Playle, Prof Mike Robling, Prof Lynne Rochester, Prof Lorna Paul, Rachel Breen, Elizabeth Randell.
The PARC (Physical Activity for people with Rare neurological Conditions) programme development work is currently gathering information prior to developing the PARC intervention for the next stage of funding. The PARC intervention will be a self-management program to support physical activity for people with rare neurological diseases, including ataxias (e.g. Friedreich’s ataxia), hereditary spastic paraparesis, Huntington’s disease, neuromuscular diseases (e.g. polyneuropathies, myasthenia and muscular dystrophies), motor neurone disease, atypical Parkinsonisms. We would like to hear from you as we are interested in understanding if and how you support physical activity for people with these conditions, in the context of your service. This information will help us to understand clinicians’ experiences and potential challenges faced in supporting physical activity for people with rare neurological conditions.
Physical activity, according to the World Health Organisation definition, is described as any bodily movement produced by the muscles that requires us to expend energy. Physical activity includes exercise as well as other activities which involve bodily movement and are done as part of playing, working, active transportation, house chores and recreational activities. Exercise is a subcategory of physical activity that is planned, structured, repetitive, and purposeful in the sense that the aim is to improve or maintain fitness.
What will I be asked to do?
This research is a survey based on multi-choice and open questions. The survey is also divided in three parts: About you (e.g. age, profession), About your service (questions on how often you see patients with rare neurological conditions), Physical activity support (questions on whether and how you provide support to be physically active). Your consent to participate is given after reading this Participant Information Sheet and clicking on the ‘I agree to take part in this study’ button at the bottom of the page.
How much of my time will I need to give?
The online survey will take about 15 minutes to complete.
What specific benefits will I receive for participating?
Participating in the study will provide you with the opportunity to reflect on your practice, specifically on the level of support you provide on physical activity to patients with rare conditions, and your beliefs and experience around this topic.
Will the study involve any discomfort for me?
Participation is unlikely to involve any discomfort for you. However, if you do start to feel uncomfortable at any stage of the study, you will be free to take a break or terminate the online activity at any time without repercussion.
How do you intend to publish the results?
Please be assured that only the researchers will have access to the raw data you provide and that all your data will be non-identifiable. The findings of the research will be published in peer-reviewed journals and presented at seminars and conferences.
Can I withdraw from the study?
Participation is entirely voluntary: you are not obliged to be involved and, if you do participate, you can withdraw at any time without giving any reason and without any consequences.
Can I tell other people about the study?
Yes, you can tell other people about the study by providing them with the research manager’s contact details (see below). They can contact the research manager to discuss their participation in the research project and obtain an information sheet.
What if I require further information?
Please contact Dr Valentina Buscemi should you wish to discuss the research further before deciding whether or not to participate. E-mail: email@example.com
What if I have a complaint?
This study has been approved by the Research Ethics Committee of School of Medicine, Cardiff University. The Approval number is 19/60. If you have any complaints or reservations about the ethical conduct of this research, you may contact the Dr James White, Senior Lecturer in Public Health, Cardiff University, e-mail address: firstname.lastname@example.org. Any issues you raise will be treated in confidence and investigated fully, and you will be informed of the outcome.
MSA = Mutiple System Atrophy
PSP = Progressive Supranuclear Palsy
CBD = Cortico Basal Degeneration
MND = Motor Neurone Disease
HSP = Hereditary Spastic Paraplegia
MG = Myasthenia Gravis