Parkinson's Disease Case Ascertainment in the EPIC Cohort: The NeuroEPIC4PD Study

Valentina Gallo, Carol Brayne, Lars Forsgren, Roger A. Barker, Jesper Petersson, Oskar Hansson, Daniel Lindqvist, Claudio Ruffmann, Lianna Ishihara, Robert Luben, Larraitz Arriola, Alberto Bergareche, Diana Gavrila, Maria Elena Erro, Nicola Vanacore, Carlotta Sacerdote, Bas Bueno-De-Mesquita, Roel Vermeulen, Meinie Seelen, Sabina SieriGiovanna Masala, Silvia Ramat, Andreas Kyrozis, Antonia Thricopolou, Salvatore Panico, Amalia Mattiello, Rudolf Kaaks, Birgit Teucher, Verena Katzke, Manja Kloss, Lisa Curry, Federico Calboli, Elio Ribolil, Paolo Vineisl, Lefkos Middleton

Research output: Contribution to journalArticlepeer-review


Background/Aims: Large epidemiological prospective studies represent an important opportunity for investigating risk factors for rare diseases such as Parkinson's disease (PD). Here we describe the procedures we used for ascertaining PD cases in the EPIC (European Prospective Investigation into Cancer and Nutrition) study. Methods: The following three-phase procedure was used: (1) elaboration of a NeuroEPIC4PD template for clinical data collection, (2) identification of all potential PD cases via record linkage and (3) validation of the diagnosis through clinical record revision, in a population of 220,494 subjects recruited in 7 European countries. All cases were labelled with the NeuroEPIC4PD diagnoses of 'definite','very likely', 'probable', or 'possible' PD. Results: A total of 881 PD cases were identified, with over 2,741,780 person-years of follow-up (199 definite, 275 very likely, 146 probable, and 261 possible). Of these, 734 were incident cases. The mean age at diagnosis was 67.9 years (SD 9.2) and 458 patients (52.0%) were men. Bradykinesia was the most frequent presenting motor sign (76.5%). Tremor-dominant and akinetic rigid forms of PD were the most common types of PD. A total of 289 patients (32.8%) were dead at the time of the last followup. Conclusions: This exercise proved that it is feasible to ascertain PD in large population-based cohort studies and offers a potential framework to be replicated in similar studies.cidence of the disease - the NeuroEPIC4PD study. The methods used in this study are expected to be generalisable to other cohorts.

Original languageEnglish
Pages (from-to)331-338
Number of pages8
JournalNeurodegenerative Diseases
Issue number6
Publication statusPublished - Nov 24 2015


  • Case ascertainment
  • Cohort study
  • EPIC study
  • Incidence
  • Parkinson's disease
  • Record linkage
  • Validation

ASJC Scopus subject areas

  • Clinical Neurology
  • Neurology


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