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 Sieri; Giovanna Masala; Silvia Ramat; Andreas Kyrozis; Antonia Thricopolou; Salvatore Panico; Amalia Mattiello; Rudolf Kaaks; Birgit Teucher; Verena Katzke; Manja Kloss; Lisa Curry; Federico Calboli; Elio Riboli; Paolo Vineis; Lefkos Middleton

doi:10.1159/000381857

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 Riboli, Paolo Vineis, Lefkos Middleton

Research output: Contribution to journal › Article › Academic › peer-review

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.

Original language	English
Pages (from-to)	331-338
Number of pages	8
Journal	Neuro-degenerative Diseases
Volume	15
Issue number	6
DOIs	https://doi.org/10.1159/000381857
Publication status	Published - 17 Sept 2015

Keywords

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

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EPICFinal published version, 539 KBLicence: Taverne

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Gallo, V., Brayne, C., Forsgren, L., Barker, R. A., Petersson, J., Hansson, O., Lindqvist, D., Ruffmann, C., Ishihara, L., Luben, R., Arriola, L., Bergareche, A., Gavrila, D., Erro, M. E., Vanacore, N., Sacerdote, C., Bueno-de-Mesquita, B., Vermeulen, R., Seelen, M., ... Middleton, L. (2015). Parkinson's Disease Case Ascertainment in the EPIC Cohort: The NeuroEPIC4PD Study. Neuro-degenerative Diseases, 15(6), 331-338. https://doi.org/10.1159/000381857

@article{a0358e511a254161bf82217153117b40,

title = "Parkinson's Disease Case Ascertainment in the EPIC Cohort: The NeuroEPIC4PD Study",

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.",

keywords = " Parkinson{\textquoteright}s disease, Cohort study, Case ascertainment, Record linkage, Validation, EPIC study, Incidence",

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

year = "2015",

month = sep,

day = "17",

doi = "10.1159/000381857",

language = "English",

volume = "15",

pages = "331--338",

journal = "Neuro-degenerative Diseases",

issn = "1660-2854",

publisher = "S. Karger AG",

number = "6",

}

Gallo, V, Brayne, C, Forsgren, L, Barker, RA, Petersson, J, Hansson, O, Lindqvist, D, Ruffmann, C, Ishihara, L, Luben, R, Arriola, L, Bergareche, A, Gavrila, D, Erro, ME, Vanacore, N, Sacerdote, C, Bueno-de-Mesquita, B, Vermeulen, R, Seelen, M, Sieri, S, Masala, G, Ramat, S, Kyrozis, A, Thricopolou, A, Panico, S, Mattiello, A, Kaaks, R, Teucher, B, Katzke, V, Kloss, M, Curry, L, Calboli, F, Riboli, E, Vineis, P & Middleton, L 2015, 'Parkinson's Disease Case Ascertainment in the EPIC Cohort: The NeuroEPIC4PD Study', Neuro-degenerative Diseases, vol. 15, no. 6, pp. 331-338. https://doi.org/10.1159/000381857

TY - JOUR

T1 - Parkinson's Disease Case Ascertainment in the EPIC Cohort

T2 - The NeuroEPIC4PD Study

AU - Gallo, Valentina

AU - Brayne, Carol

AU - Forsgren, Lars

AU - Barker, Roger A

AU - Petersson, Jesper

AU - Hansson, Oskar

AU - Lindqvist, Daniel

AU - Ruffmann, Claudio

AU - Ishihara, Lianna

AU - Luben, Robert

AU - Arriola, Larraitz

AU - Bergareche, Alberto

AU - Gavrila, Diana

AU - Erro, Maria Elena

AU - Vanacore, Nicola

AU - Sacerdote, Carlotta

AU - Bueno-de-Mesquita, Bas

AU - Vermeulen, Roel

AU - Seelen, Meinie

AU - Sieri, Sabina

AU - Masala, Giovanna

AU - Ramat, Silvia

AU - Kyrozis, Andreas

AU - Thricopolou, Antonia

AU - Panico, Salvatore

AU - Mattiello, Amalia

AU - Kaaks, Rudolf

AU - Teucher, Birgit

AU - Katzke, Verena

AU - Kloss, Manja

AU - Curry, Lisa

AU - Calboli, Federico

AU - Riboli, Elio

AU - Vineis, Paolo

AU - Middleton, Lefkos

PY - 2015/9/17

Y1 - 2015/9/17

N2 - 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.

AB - 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.

KW - Parkinson’s disease

KW - Cohort study

KW - Case ascertainment

KW - Record linkage

KW - Validation

KW - EPIC study

KW - Incidence

U2 - 10.1159/000381857

DO - 10.1159/000381857

M3 - Article

C2 - 26375921

SN - 1660-2854

VL - 15

SP - 331

EP - 338

JO - Neuro-degenerative Diseases

JF - Neuro-degenerative Diseases

IS - 6

ER -

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

Abstract

Keywords

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