The Neuro LTC (long term conditions) research project aims to identify and better understand the factors and events that influence the care needs of people with long term neurological conditions, including Huntington’s disease.
The project will identify the factors that predict levels of care. It will also identify the events that can lead to an increase in care – either at home or with an admission to hospital.
The long term aim of the project is to help to better match available resources to individuals’ care needs.
The research study is organised by Dr Christopher Kipps, Consultant Neurologist at University Hospital Southampton NHS Foundation Trust. It is sponsored by the University of Southampton and is supported by the National Institute for Health Research (NIHR), Collaborations for Leadership in Applied Health Research and Care (CLAHRC) Wessex.
The researchers are currently looking for people to take part in a short survey.
They are particularly interested in hearing from people who live in the following areas in the south of England:
The first phase of the study is a survey for patients, caregivers and people who have been caregivers in the past. The survey asks you about your personal experiences of what affects the care that a person living with Huntington’s disease requires.
You can complete the survey online, on paper or over the phone. It usually takes about 15 minutes to complete the survey. There will only be one survey to complete and no further participation from you is required at this time.
If you are interested in taking part and would like more information, please contact the research officer Sarah Fearn at S.Fearn@soton.ac.uk or on 07393 762105.