Survey for family members and/or carers Participant Information Sheet (PIS) You are invited to participate in a research study being conducted by Prof Monica Busse (Cardiff University), Dr Gita Ramdharry (National Hospital for Neurology & Neurosurgery, UCLH), 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. Project Summary 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. With this survey, we would like to hear from you and understand your opinion regarding your experience of supporting your family member in being physically active and possible barriers or challenges you may have faced in doing this. 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 two parts: About you (e.g. age) and About physical activity (e.g. questions on whether and how you support your family member or the person you care for 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 experience of supporting your family member (or the person you care for) to be physically active, and barriers that you may have faced in doing this in your daily life. Will the study involve any discomfort for me? If so, what will you do to rectify it? 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 (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. Email: valentina.buscemi@nhs.net 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: whitej11@cardiff.ac.uk. Any issues you raise will be treated in confidence and investigated fully, and you will be informed of the outcome. | 