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

Gallo, Valentina; Brayne, Carol; Forsgren, Lars; Barker, Roger A.; Petersson, Jesper LU ; Hansson, Oskar LU ; Lindqvist, Daniel LU ; Ruffmann, Claudio; Ishihara, Lianna and Luben, Robert, et al. (2015) In Neurodegenerative Diseases 15(6). p.331-338
Abstract
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',... (More)
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 follow-up. 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. (C) 2015 S. Karger AG, Basel (Less)
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@article{57bdde42-cc39-4952-9bfd-ec11e518fd00,
  abstract     = {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 follow-up. 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. (C) 2015 S. Karger AG, Basel},
  author       = {Gallo, Valentina and Brayne, Carol and Forsgren, Lars and Barker, Roger A. and Petersson, Jesper and Hansson, Oskar and Lindqvist, Daniel and Ruffmann, Claudio and Ishihara, Lianna and Luben, Robert and Arriola, Larraitz and Bergareche, Alberto and Gavrila, Diana and Erro, Maria Elena and Vanacore, Nicola and Sacerdote, Carlotta and Bueno-De-Mesquita, Bas and Vermeulen, Roel and Seelen, Meinie and Sieri, Sabina and Masala, Giovanna and Ramat, Silvia and Kyrozis, Andreas and Thricopolou, Antonia and Panico, Salvatore and Mattiello, Amalia and Kaaks, Rudolf and Teucher, Birgit and Katzke, Verena and Kloss, Manja and Curry, Lisa and Calboli, Federico and Riboli, Elio and Vineis, Paolo and Middleton, Lefkos},
  issn         = {1660-2862},
  keyword      = {Parkinson's disease,Cohort study,Case ascertainment,Record linkage,Validation,EPIC study,Incidence},
  language     = {eng},
  number       = {6},
  pages        = {331--338},
  publisher    = {Karger},
  series       = {Neurodegenerative Diseases},
  title        = {Parkinson's Disease Case Ascertainment in the EPIC Cohort: The NeuroEPIC4PD Study},
  url          = {http://dx.doi.org/10.1159/000381857},
  volume       = {15},
  year         = {2015},
}