Tracking Parkinson’s: Study Design and Baseline Patient Data

Naveed Malek, Diane Swallow, Katherine Grosset, Michael A Lawton, Sarah Marrinan, Alexander Lehn, Catherine Bresner, Nin Bajaj, Roger Barker, Yoav Ben-Shlomo, David Burn, Thomas Foltynie, John Hardy, Huw Morris, Nigel Williams, Nicholas Wood, Donald Grosset

Research output: Contribution to journalArticle (Academic Journal)peer-review

45 Citations (Scopus)
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Background: There is wide variation in the phenotypic expression of Parkinson’s disease (PD), which is driven by both genetic and epidemiological influences.Objectives: To define and explain variation in the clinical phenotype of PD, in relation to genotypic variation.

Methods: Tracking Parkinson’s is a multicentre prospective longitudinal epidemiologic and biomarker study of PD. Patients attending specialist clinics in the United Kingdom with recent onset (<3.5 years) and young onset (diagnosed <50 years of age) PD were enrolled. Motor, non-motor and quality of life assessments were performed using validated scales. Cases are followed up 6 monthly up to 4.5 years for recent onset PD, and up to 1 year for young onset PD. We present here baseline clinical data from this large and demographically representative cohort.

Results: 2247 PD cases were recruited (1987 recent onset, 260 young onset). Recent onset cases had a mean (standard deviation, SD) age of 67.6 years (9.3) at study entry, 65.7% males, with disease duration 1.3 years (0.9), MDS-UPDRS 3 scores 22.9 (12.3), LEDD 295 mg/day (211) and PDQ-8 score 5.9 (4.8). Young onset cases were 53.5 years old (7.8) at study entry, 66.9% male, with disease duration 10.2 years (6.7), MDS-UPDRS 3 scores 27.4 (15.3), LEDD 926 mg/day (567) and PDQ-8 score 11.6 (6.1).

Conclusions: We have established a large clinical PD cohort, consisting of young onset and recent onset cases, which is designed to evaluate variation in clinical expression, in relation to genetic influences, and which offers a platform for future imaging and biomarker research.
Original languageEnglish
Number of pages13
JournalJournal of Parkinson's Disease
Issue number4
Publication statusPublished - 31 Oct 2015


  • Parkinson’s disease
  • heterogeneity
  • genotype
  • phenotype


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