The Prospect Research Study
This study is looking for people with MSA to participate in order to find out more about the condition and track the effectiveness of new interventions.
There are two elements to this, a longitudinal study based in specific clinics, and a UK wide remote patient based study involving patients in their own home, local hospital and local general practice.
The network involves 7 core centres across the UK – London, Oxford, Cambridge, Manchester, Brighton, Newport and Newcastle – which have a strong history of supporting people with MSA.
The longitudinal study involves several clinical and biomarker assessments which include brain scans, blood samples and, for some patients, spinal fluid samples. This will be followed by a ‘lighter touch’ follow up over the phone or during a clinic visit.
The UK wide, cross-sectional study involves donating a one-off blood sample at your local GP or hospital, together with filling in questionnaires at home. We would like to include people with MSA and people unaffected by neurological diseases.
Ultimately, it is hoped that the research will aid the development of new and improved treatments for MSA and raise the profile of MSA research in the UK.
If you are interested in participating in MSA research, please contact Dr John Woodside at Email: email@example.com or Phone: 020 7679 4272.
The OPTCARE Neuro project is looking to recruit patients with long-term neurological conditions (such as MSA) who might benefit from short-term integrated palliative care (SIPC).
Palliative care provides an extra layer of support to people living with advanced illness (such as neurological conditions) and the people close to them. Palliative care services aim to enable people to live well with increasing illness by providing the support they need to pursue the things they and the people close to them feel are important, and to plan future care particularly for when nearing the end of life.
Those who take part in this trial are randomised to receive the intervention of SIPC either straight away, or after a 12 week delay. Once participants consent to take part, they will complete a baseline questionnaire with a research nurse, and will then complete questionnaires at 6 week intervals for 24 weeks.
OPTCARE Neuro is currently open in 6 sites across the UK to patients with a diagnosis of MSA. To take part, you must be living in the catchment area of the Short-term Integrated Palliative Care Service, detailed below for each of our study sites:
Brighton: Brighton and Hove City Council and Lewes District Council
Cardiff: North, West and Central Cardiff, as well as Cardiff City Council and Vale of Glamorgan Borough Council
King’s College Hospital, London: Lambeth, Southwark, Lewisham, Greenwich or Bexley
Liverpool: North Sefton (not South Sefton) plus West Lancashire
Nottingham: Nottingham City CCG, Nottingham North and East CCG, Rushcliffe CCG, Nottingham West CCG
Chertsey: Runnymede, Hounslow, Spelthorne, Woking, Windsor & Maidenhead or Elmbridge
If you are already seeing a palliative care team, or have done so in the last 6 months, unfortunately you will not be eligible to participate in this trial.
If you would like to be involved or would like more information, please contact the Trial administrator, Debbie Tonkin, who can put you in contact with the relevant person at the site closest to you.