The prevalence of Parkinson’s Disease in North Cumbria

• Research type

  Research Study

• Full title

  The prevalence of Parkinson’s Disease in North Cumbria: disease severity, related complications and challenges faced by a rural population

• IRAS ID

  315626

• Contact name

  Ailish O'Callaghan

• Contact email

  ailish.o'callaghan@ncic.nhs.uk

• Sponsor organisation

  North Cumbria Integrated Care NHS Foundation Trust, R&D Department

• Duration of Study in the UK

  2 years, 11 months, 30 days

• Research summary

  The proposed 3 year study is to identify the number of people affected by Parkinson’s Disease (PD) within North Cumbria, to explore the challenges faced in managing this condition in a rural population and look in detail at certain symptoms in those with the most advanced disease. PD is a progressive neurological condition with symptoms affecting quality of life, knowing prevalence is crucial to enable planning of effective health and social services and provides insight into potential causes of disease. Prevalence can be compared with similar studies to assess trends.
  People within the study area with a possible diagnosis of PD will be identified using hospital, pharmacy and GP records. Results obtained using this methodology can be compared with studies using national primary care data alone, giving insight into the accuracy of such methods of wider case finding.
  Those not known to the North Cumbria PD service will be provided with written information about the study. If consenting to participate they will be visited by a clinician to verify diagnosis according to validated criteria. Demographic data including age, sex, ethnicity, first 3 letters of postcode and occupation will be gathered. Data pertaining to disease including date of onset, severity, contact with specialist services and care needs will also be collected.
  Those with advanced disease, typically living in care homes or who can no longer attend clinic, will all be assessed in more detail. Validated scales will be used to assess disease related complications and impact on daily living. We will record participant access to technology and transport as well as advanced care planning (ACP) provision, including documented discussions of expressed patient preferences for treatment and care as they approach the end of their life.

• REC name

  London - Brighton & Sussex Research Ethics Committee

• REC reference

  22/LO/0749

• Date of REC Opinion

  16 Dec 2022

• REC opinion

  Further Information Favourable Opinion