FUNDING Funding sources for the respective studies are as follows: The Norwegian ParkWest study has been funded by the Research Council of Norway (177966), the Western Norway Regional Health Authority (911218), and the Norwegian Parkinson's Disease Association. PINE study was supported by Parkinson's UK (G0502, G0914, and G1302), Scottish Government Chief Scientist Office, BMA Doris Hillier Award, the BUPA Foundation, NHS Grampian Endowments, and RS MacDonald Trust. The Swedish Medical Research Council, the Swedish Parkinson's Disease Association, the Swedish Parkinson's Foundation, Erling Persson Foundation, Kempe Foundation, and the Västerbotten County Council have funded the NYPUM study. The Research Council of Norway (287842) supported AS, JM-G, and GA. ACKNOWLEDGMENTS The authors would like to thank all of the patients and controls for participation in each of the studies. Equally, we thank all members of each of the study groups and other personnel for their contributions. ; Peer reviewed ; Publisher PDF
Acknowledgements We would like to thank all participants and funders of PICC and of the individual cohort studies. Members of PICC Steering Group: Dr. Angus D. Macleod, Dr. Carl E. Counsell, University of Aberdeen (chairperson), UK; Prof. Ole-Bjørn Tysnes, University of Bergen, Norway; Marta Camacho, Dr. Caroline Williams-Gray, University of Cambridge, UK; Dr. Rachael A. Lawson, Newcastle University, UK; Dr. Jodi Maple-Grødem, Prof. Guido Alves, Stavanger University Hospital, Norway; Prof. Lars Forgren, Umeå, Dr. David Backstrom, University, Sweden. We acknowledge the contributions of members of the individual study groups: PICNICS study: Principal investigators: Roger A. Barker, Caroline H. Williams-Gray. Study personnel: Jonathan Evans, Gemma Cummins, David P. Breen, Ruwani Wijeyekoon, Kirsten Scott, Tom Stoker, Julia Greenland, Marta Camacho, Natalie Valle Guzman, Lucy Collins, Simon Stott and Sarah Mason. ParkWest Study: ParkWest Principal investigators: Guido Alves (Norwegian Centre for Movement Disorders, Stavanger University Hospital) and Ole-Bjørn Tysnes (Haukeland University Hospital). Study personnel: Michaela Dreetz Gjerstad, Kenn Freddy Pedersen, Elin Bjelland Forsaa, Veslemøy Hamre Frantzen, Anita Laugaland, Jodi Maple-Grødem, Johannes Lange, Karen Simonsen, Eldbjørg Fiske and Ingvild Dalen, Bernd Müller, Geir Olve Skeie and Marit Renså; Wenche Telstad, Aliaksei Labusau and Jane Kastet; Ineke HogenEsch, Marianne Kjerandsen and Liv Kari Håland; Karen Herlofson, Solgunn Ongre and Siri Bruun. The PICC collaboration was funded by the Chief Scientist Office of the Scottish Government, NHS Education for Scotland, and the Academy of Medical Sciences. The PICNICS study has received funding from the Cure Parkinson's Trust, the Van Geest Foundation, the Medical Research Council (MRC) and Parkinson's UK. This work was also supported by the National Institute for Health Research (NIHR) Cambridge Biomedical Research Centre Dementia and Neurodegeneration Theme (grant no. 146281). The views expressed are those of ...
Acknowledgements We would like to thank all participants and funders of PICC and of the individual cohort studies. Members of PICC Steering Group: Dr. Angus D. Macleod, Dr. Carl E. Counsell, University of Aberdeen (chairperson), UK; Prof. Ole-Bjørn Tysnes, University of Bergen, Norway; Marta Camacho, Dr. Caroline Williams-Gray, University of Cambridge, UK; Dr. Rachael A. Lawson, Newcastle University, UK; Dr. Jodi Maple-Grødem, Prof. Guido Alves, Stavanger University Hospital, Norway; Prof. Lars Forgren, Umeå, Dr. David Backstrom, University, Sweden. We acknowledge the contributions of members of the individual study groups: PICNICS study: Principal investigators: Roger A. Barker, Caroline H. Williams-Gray. Study personnel: Jonathan Evans, Gemma Cummins, David P. Breen, Ruwani Wijeyekoon, Kirsten Scott, Tom Stoker, Julia Greenland, Marta Camacho, Natalie Valle Guzman, Lucy Collins, Simon Stott and Sarah Mason. ParkWest Study: ParkWest Principal investigators: Guido Alves (Norwegian Centre for Movement Disorders, Stavanger University Hospital) and Ole-Bjørn Tysnes (Haukeland University Hospital). Study personnel: Michaela Dreetz Gjerstad, Kenn Freddy Pedersen, Elin Bjelland Forsaa, Veslemøy Hamre Frantzen, Anita Laugaland, Jodi Maple-Grødem, Johannes Lange, Karen Simonsen, Eldbjørg Fiske and Ingvild Dalen, Bernd Müller, Geir Olve Skeie and Marit Renså; Wenche Telstad, Aliaksei Labusau and Jane Kastet; Ineke HogenEsch, Marianne Kjerandsen and Liv Kari Håland; Karen Herlofson, Solgunn Ongre and Siri Bruun. The PICC collaboration was funded by the Chief Scientist Office of the Scottish Government, NHS Education for Scotland, and the Academy of Medical Sciences. The PICNICS study has received funding from the Cure Parkinson's Trust, the Van Geest Foundation, the Medical Research Council (MRC) and Parkinson's UK. This work was also supported by the National Institute for Health Research (NIHR) Cambridge Biomedical Research Centre Dementia and Neurodegeneration Theme (grant no. 146281). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. M.C. is supported by Centre for Parkinson's Plus and funded by the Evelyn Trust (proj ref 19/24). R.A.B. is supported by the Wellcome Trust Stem Cell Institute (Cambridge 203151/Z/16/Z). D.P.B. is supported by a Wellcome Clinical Research Career Development Fellowship (214571/Z/18/Z). C.H.W.G. is supported by a RCUK/UKRI Research Innovation Fellowship awarded by the MRC (MR/R007446/1) and by the Cambridge Centre for Parkinson-Plus. The Norwegian ParkWest study has been funded by the Research Council of Norway (grant number 177966) and the Western Norway Regional Health Authority (grant number 911218), and the Norwegian Parkinson's Disease Association. J.M.-G. and G.A. are supported by the Research Council of Norway (grant number 287842). R.A.L. is supported by a Senior Research Fellowship from Parkinson's UK (F-1801). ; Peer reviewed ; Publisher PDF
PINE was supported by Parkinson's UK (grant numbers G0502, G0914, G1302), Scottish Government Chief Scientist Office, BMA Doris Hillier Award, the BUPA Foundation, NHS Grampian Endowments, and RS MacDonald Trust. The Norwegian ParkWest study has been funded by the Research Council of Norway (grant number 177966), the Western Norway Regional Health Authority (grant number 911218), Stavanger University Hospital Research Funds (grant number 501611), and the Norwegian Parkinson's Disease Association. Janete Chung and Kristin Aaser Lunde are supported by the Western Norway Regional Health Authority (grant numbers 911859 and 911830). The NYPUM study has been funded by the Swedish Medical Research Council, the Swedish Parkinson's Disease Association, the Swedish Parkinson Foundation, Erling Persson Foundation, Kempe Foundation and the Västerbotten County Council. The funding sources had no role in the design and conduct of the study: collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript: and decision to submit the manuscript for publication. ; Peer reviewed ; Postprint
ACKNOWLEDGMENTS The authors would like to thank all of the patients and controls for participation in each of the studies. Equally, we thank all members of each of the study groups and other personnel for their contributions. Funding sources for the respective studies are as follows: The Norwegian ParkWest study has been funded by the Research Council of Norway (177966), the Western Norway Regional Health Authority (911218), the Norwegian Parkinson's Research Foundation, and Rebergs Legacy. PINE study was supported by Parkinson's UK (G0502, G0914, G1302), Scottish Government Chief Scientist Office, BMA Doris Hillier Award, the BUPA Foundation, NHS Grampian Endowments, and RS MacDonald Trust. The NYPUM study has been funded by the Swedish Medical Research Council, the Swedish Parkinson's disease Association, the Swedish Parkinson's Foundation, Parkinson Research Foundation, Erling Persson Foundation, Kempe Foundation, the Swedish Brain Foundation (Hjarnfonden), and the Vasterbotten County Council. AAS, JMG and GA are supported by the Research Council of Norway (287842). BLF acknowledges support through donations to the UCLA Clinical Neurogenomics Research Center. CK is supported by the NIH grant F32AG063442. The PEG study was supported by NIH/NIEHS grants R01-ES010544 and U54-ES012078. Publication of this manuscript was supported under the The Michael J. Fox Foundation: 2021 RFA: Accelerating Publication of Parkinson's Disease Replication Data. ; Peer reviewed ; Publisher PDF
INTRODUCTION: Functional dependency in basic activities of daily living (ADLs) is a key outcome in Parkinson's disease (PD). We aimed to define dependency in PD, using the original and MDS versions of the Unified Parkinson's Disease Rating Scale (UPDRS). METHODS: We developed two algorithms to define dependency from items of UPDRS Part 2 and MDS-UPDRS Part 2 relating to basic ADLs (feeding, dressing, hygiene and walking, and getting out of a chair). We validated both algorithms using data from 1110 patients from six community-based PD incidence cohorts, testing concurrent validity, convergent validity, and predictive validity. RESULTS: Our optimal algorithm showed high specificity and moderate to high sensitivity versus Schwab & England <80% (specificity 95% [95% confidence interval (CI) 93-97] and sensitivity 65% [95% CI 55-73] at baseline; 88% [95% CI 85-91] and 85% [95% CI 79-97] respectively at five-years follow-up). Convergent validity was demonstrated by strong associations between dependency defined by the algorithm and cognition (MMSE), quality of life (PDQ39), and impairment (UPDRS part 3) (all p < 0.001). Algorithm-defined dependency status also predicted mortality: HR for mortality in those dependent vs independent at baseline was 1.6 (95%CI 1.2-2.1) and in those dependent vs independent at five-years' follow-up was 2.2 (1.6-3.0). DISCUSSION: We have demonstrated the concurrent validity, convergent validity, and predictive validity of a UPDRS-/MDS-UPDRS-based algorithm to define functional dependency in PD. This can be used for studying dependency in any study where UPDRS or MDS-UPDRS part 2 data have been collected. ; The PICC collaboration was funded by the Chief Scientist Office of the Scottish Government, NHS Education for Scotland, and the Academy of Medical Sciences. The CamPaIGN study has received funding from the Wellcome Trust, the Medical Research Council, the Patrick Berthoud Trust, Parkinson's UK, and the National Institute for Health Research (NIHR) Cambridge Biomedical Research Centre Dementia and Neurodegeneration Theme (ref. 146281). The ICICLE-PD study was funded by Parkinson's UK (J-0802, G-1301, G-1507) and the, Lockhart Parkinson's Disease Research Fund. The research was supported by the NIHR Newcastle Biomedical Research Unit and Centre based at Newcastle upon Tyne Hospitals NHS Foundation Trust and Newcastle University, and the National Institute for Health Research (NIHR) Cambridge Biomedical Research Centre Dementia and Neurodegeneration Theme (ref. 146281). The NYPUM study was funded by Swedish Medical Research Council, Parkinson Foundation in Sweden, the Swedish Parkinson Disease Association, University of Umeå, Foundation for Clinical Neuroscience at Umeå University Hospital, Västerbotten County Council (ALF) and King Gustaf V's and Queen Victoria's foundation The Norwegian ParkWest study was funded by the Western Norway Regional Health Authority (grant No 911218), the Research Council of Norway (grant No 177966 and 287842) and the Norwegian Parkinson Research Foundation. The PICNICS study was funded by the Cure Parkinson's Trust, the Van Geest Foundation, the MRC and Parkinson's UK, and the National Institute for Health Research (NIHR) Cambridge Biomedical Research Centre Dementia and Neurodegeneration Theme (ref. 146281). The PINE study was funded by Parkinson's UK, the Scottish Chief Scientist Office, NHS Grampian endowments, the BMA Doris Hillier award, RS Macdonald Trust, the BUPA Foundation and SPRING. C H Williams-Gray holds a RCUK/UKRI Research Innovation Fellowship awarded by the Medical Research Council (MR/R007446/1) and receives support from the Cambridge Centre for Parkinson-Plus.
