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Research paper
The CamPaIGN study of Parkinson's disease: 10-year outlook in an incident population-based cohort
  1. Caroline H Williams-Gray1,
  2. Sarah L Mason1,
  3. Jonathan R Evans1,
  4. Thomas Foltynie2,
  5. Carol Brayne3,
  6. Trevor W Robbins4,
  7. Roger A Barker1
  1. 1John Van Geest Centre for Brain Repair, Department of Clinical Neurosciences, University of Cambridge, Cambridge, UK
  2. 2Sobell Department of Motor Neuroscience, Institute of Neurology, University College London, London, UK
  3. 3Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK
  4. 4Department of Psychology, and Behavioural and Clinical Neuroscience Institute, University of Cambridge, Cambridge, UK.
  1. Correspondence to Dr Caroline Williams-Gray, John Van Geest Centre for Brain Repair, Department of Clinical Neurosciences, University of Cambridge, Forvie Site, Robinson Way, Cambridge, CB2 0PY, UK. chm27{at}cam.ac.uk

Abstract

Background Prognosis in Parkinson's disease (PD) remains poorly understood due to a lack of unbiased data on the natural history of treated PD. The CamPaIGN study has been the first to prospectively track disease evolution from diagnosis in an unselected population-representative incident cohort. We now report the 10-year follow-up data, focusing on three key irreversible milestones: postural instability (Hoehn and Yahr 3), dementia and death.

Methods The cohort was collected between December 2000 and 2002. Those meeting diagnostic criteria (n=142) were followed-up until 1 January 2012. Clinical, neuropsychological and genetic testing were performed. Progression to key milestones was evaluated using Kaplan–Meier and Cox regression survival analyses.

Results At 10 years, 55% had died, 68% of survivors had postural instability and 46% dementia. 23% had a good outcome at 10 years (surviving free of dementia/postural instability). Death rate was comparable with the UK population (standardised mortality ratio 1.29 (0.97–1.61)). Death certificates indicated PD was a substantial contributor in only 20%, with pneumonia being the commonest cause of death. Age, non-tremor-dominant motor phenotype and comorbidity predicted earlier postural instability. Baseline predictors of dementia were age, motor impairment, ‘posterior-cortical’ cognitive deficits and MAPT genotype.

Conclusions (1) outlook in PD is heterogeneous, with most dying or developing dementia or postural instability by 10 years from diagnosis, but a quarter still doing well, with preserved mobility and intact cognition; (2) death is not directly related to PD in the majority; (3) baseline clinical and genetic variables are predictive of outcome and may be helpful in selecting patients for clinical trials.

  • Parkinson's Disease
  • Epidemiology
  • Dementia
  • Genetics

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