Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes (TORPEDO): identifying a core dataset for asthma and COPD studies

Job F. M. van Boven; Sarah J. Lucas; Gary Parker; Alan Kaplan; Antigona Trofor; Billie Bonevski; Bruce J. Kirenga; Dermot Ryan; Emilio Pizzichini; Eric van Ganse; Erick Wan-Chun Huang; Evelyn Brakema; Gillian Gould; Janwillem Kocks; Jennifer Alison; Jennifer K. Quint; Joan B. Soriano; John Hurst; Kamran Siddiqi; Katherine Boydell; Marc Miravitlles; Mario Alberto Flores-Valdez; Marise Kasteleyn; Mark FitzGerald; Melanie Boeckmann; Michael Chaiton; Miguel Roman Rodriguez; Muralidhar Kulkarni; Nicholas Roche; Niels Chavannes; Nikolaos G. Papadopoulos; Panagiotis Behrakis; Sarah Dennis; Shalini Bassi; Siân Williams; Toby M. Maher; Trishul Siddharthan; Veena Kamath; Katia M. C. Verhamme; REG/GACD TORPEDO collaborators

doi:10.1101/2021.10.14.21264843

Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes (TORPEDO): identifying a core dataset for asthma and COPD studies

Job F. M. van Boven, Sarah J. Lucas, Gary Parker, Alan Kaplan, Antigona Trofor, Billie Bonevski, Bruce J. Kirenga, Dermot Ryan, Emilio Pizzichini, Eric van Ganse, Erick Wan-Chun Huang, Evelyn Brakema, Gillian Gould, Janwillem Kocks, Jennifer Alison, Jennifer K. Quint, Joan B. Soriano, John Hurst, Kamran Siddiqi, Katherine BoydellMarc Miravitlles, Mario Alberto Flores-Valdez, Marise Kasteleyn, Mark FitzGerald, Melanie Boeckmann, Michael Chaiton, Miguel Roman Rodriguez, Muralidhar Kulkarni, Nicholas Roche, Niels Chavannes, Nikolaos G. Papadopoulos, Panagiotis Behrakis, Sarah Dennis, Shalini Bassi, Siân Williams, Toby M. Maher, Trishul Siddharthan, Veena Kamath, Katia M. C. Verhamme, REG/GACD TORPEDO collaborators

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Abstract

Purpose There remains a need for a standardized dataset for respiratory studies to accelerate data collection, improve research efficiency and aid the sharing, merging and comparison of datasets. This TORPEDO (Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes) project aimed to develop a checklist of optimum and minimum variables for asthma and chronic obstructive pulmonary disease (COPD) research.

Methods A 3-phase modified Delphi survey was conducted: in phase 1, an expert panel generated a list of variables, in phase 2 a Delphi panel selected the minimum variables (>66% agreement) for any design and in phase 3 they were asked to select a minimum set for specific study designs.

Results In phase 1 the expert panel (n=22) proposed 224 variables. In phase 2, voting by 64 participants resulted in consensus (>66% agreement) for 18 variables and partial agreement (50-66%) for 44 variables, following this, 5 technical variables (e.g. date of test) were removed. In phase 3, 34 members of the Delphi panel completed voting; consensus was reached for 13 variables for retrospective asthma studies and 34 for prospective asthma studies. For COPD, there were 16 variables for retrospective studies and 37 for prospective studies. Gender, asthma/COPD exacerbations and patient-reported outcomes were the only variables with 100% agreement for both asthma and COPD studies.

Conclusion The proposed list of minimally required variables will allow the assessment of current data sources for their utility in asthma and COPD studies, facilitate the merging of datasets, aid standardization of data collection and improve research efficiency.

Original language	English
Pages	1-26
Number of pages	29
DOIs	https://doi.org/10.1101/2021.10.14.21264843
Publication status	Submitted - 2021
Externally published	Yes

Publication series

Name	medRxiv

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Copyright the Author(s). Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

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Submitted version (open access)Submitted manuscript, 240 KBLicence: CC BY-ND

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van Boven, J. F. M., Lucas, S. J., Parker, G., Kaplan, A., Trofor, A., Bonevski, B., Kirenga, B. J., Ryan, D., Pizzichini, E., van Ganse, E., Huang, E. W.-C., Brakema, E., Gould, G., Kocks, J., Alison, J., Quint, J. K., Soriano, J. B., Hurst, J., Siddiqi, K., ... REG/GACD TORPEDO collaborators (2021). Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes (TORPEDO): identifying a core dataset for asthma and COPD studies. (pp. 1-26). (medRxiv). https://doi.org/10.1101/2021.10.14.21264843

@techreport{e035cda003c349f0ba49932f0c21c1a9,

title = "Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes (TORPEDO): identifying a core dataset for asthma and COPD studies",

abstract = "Purpose There remains a need for a standardized dataset for respiratory studies to accelerate data collection, improve research efficiency and aid the sharing, merging and comparison of datasets. This TORPEDO (Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes) project aimed to develop a checklist of optimum and minimum variables for asthma and chronic obstructive pulmonary disease (COPD) research.Methods A 3-phase modified Delphi survey was conducted: in phase 1, an expert panel generated a list of variables, in phase 2 a Delphi panel selected the minimum variables (>66% agreement) for any design and in phase 3 they were asked to select a minimum set for specific study designs.Results In phase 1 the expert panel (n=22) proposed 224 variables. In phase 2, voting by 64 participants resulted in consensus (>66% agreement) for 18 variables and partial agreement (50-66%) for 44 variables, following this, 5 technical variables (e.g. date of test) were removed. In phase 3, 34 members of the Delphi panel completed voting; consensus was reached for 13 variables for retrospective asthma studies and 34 for prospective asthma studies. For COPD, there were 16 variables for retrospective studies and 37 for prospective studies. Gender, asthma/COPD exacerbations and patient-reported outcomes were the only variables with 100% agreement for both asthma and COPD studies.Conclusion The proposed list of minimally required variables will allow the assessment of current data sources for their utility in asthma and COPD studies, facilitate the merging of datasets, aid standardization of data collection and improve research efficiency.",

author = "{van Boven}, {Job F. M.} and Lucas, {Sarah J.} and Gary Parker and Alan Kaplan and Antigona Trofor and Billie Bonevski and Kirenga, {Bruce J.} and Dermot Ryan and Emilio Pizzichini and {van Ganse}, Eric and Huang, {Erick Wan-Chun} and Evelyn Brakema and Gillian Gould and Janwillem Kocks and Jennifer Alison and Quint, {Jennifer K.} and Soriano, {Joan B.} and John Hurst and Kamran Siddiqi and Katherine Boydell and Marc Miravitlles and Flores-Valdez, {Mario Alberto} and Marise Kasteleyn and Mark FitzGerald and Melanie Boeckmann and Michael Chaiton and Rodriguez, {Miguel Roman} and Muralidhar Kulkarni and Nicholas Roche and Niels Chavannes and Papadopoulos, {Nikolaos G.} and Panagiotis Behrakis and Sarah Dennis and Shalini Bassi and Si{\^a}n Williams and Maher, {Toby M.} and Trishul Siddharthan and Veena Kamath and Verhamme, {Katia M. C.} and {REG/GACD TORPEDO collaborators} and Ana Quintana and Brusselle Guy and {Kook Rhee}, Chin and Emmanuel Guindon and Faisal Yunus and Francisco Gonzalez-Salazar and Guillermo Paraje and Guy Marks and Hana Ross and Helen Reddel and Ian Glaspole and Ivan Kimuli and Jiapeng Lu and John Britton and {Kathia Cardenas}, Maria and Michael Schatz and Naveen Puttaswamy and Nicole Vellios and Olena Tigova and Pawan Tiwari and Raana Zahid and Robert Schwartz and Steve Turner and Sudeepa Khanal and {van der Molen}, Thys and Tomi Kovacevic",

note = "Copyright the Author(s). Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.",

year = "2021",

doi = "10.1101/2021.10.14.21264843",

language = "English",

series = "medRxiv",

pages = "1--26",

type = "WorkingPaper",

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van Boven, JFM, Lucas, SJ, Parker, G, Kaplan, A, Trofor, A, Bonevski, B, Kirenga, BJ, Ryan, D, Pizzichini, E, van Ganse, E, Huang, EW-C, Brakema, E, Gould, G, Kocks, J, Alison, J, Quint, JK, Soriano, JB, Hurst, J, Siddiqi, K, Boydell, K, Miravitlles, M, Flores-Valdez, MA, Kasteleyn, M, FitzGerald, M, Boeckmann, M, Chaiton, M, Rodriguez, MR, Kulkarni, M, Roche, N, Chavannes, N, Papadopoulos, NG, Behrakis, P, Dennis, S, Bassi, S, Williams, S, Maher, TM, Siddharthan, T, Kamath, V, Verhamme, KMC & REG/GACD TORPEDO collaborators 2021 'Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes (TORPEDO): identifying a core dataset for asthma and COPD studies' medRxiv, pp. 1-26. https://doi.org/10.1101/2021.10.14.21264843

TY - UNPB

T1 - Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes (TORPEDO)

T2 - identifying a core dataset for asthma and COPD studies

AU - van Boven, Job F. M.

AU - Lucas, Sarah J.

AU - Parker, Gary

AU - Kaplan, Alan

AU - Trofor, Antigona

AU - Bonevski, Billie

AU - Kirenga, Bruce J.

AU - Ryan, Dermot

AU - Pizzichini, Emilio

AU - van Ganse, Eric

AU - Huang, Erick Wan-Chun

AU - Brakema, Evelyn

AU - Gould, Gillian

AU - Kocks, Janwillem

AU - Alison, Jennifer

AU - Quint, Jennifer K.

AU - Soriano, Joan B.

AU - Hurst, John

AU - Siddiqi, Kamran

AU - Boydell, Katherine

AU - Miravitlles, Marc

AU - Flores-Valdez, Mario Alberto

AU - Kasteleyn, Marise

AU - FitzGerald, Mark

AU - Boeckmann, Melanie

AU - Chaiton, Michael

AU - Rodriguez, Miguel Roman

AU - Kulkarni, Muralidhar

AU - Roche, Nicholas

AU - Chavannes, Niels

AU - Papadopoulos, Nikolaos G.

AU - Behrakis, Panagiotis

AU - Dennis, Sarah

AU - Bassi, Shalini

AU - Williams, Siân

AU - Maher, Toby M.

AU - Siddharthan, Trishul

AU - Kamath, Veena

AU - Verhamme, Katia M. C.

AU - REG/GACD TORPEDO collaborators

AU - Quintana, Ana

AU - Guy, Brusselle

AU - Kook Rhee, Chin

AU - Guindon, Emmanuel

AU - Yunus, Faisal

AU - Gonzalez-Salazar, Francisco

AU - Paraje, Guillermo

AU - Marks, Guy

AU - Ross, Hana

AU - Reddel, Helen

AU - Glaspole, Ian

AU - Kimuli, Ivan

AU - Lu, Jiapeng

AU - Britton, John

AU - Kathia Cardenas, Maria

AU - Schatz, Michael

AU - Puttaswamy, Naveen

AU - Vellios, Nicole

AU - Tigova, Olena

AU - Tiwari, Pawan

AU - Zahid, Raana

AU - Schwartz, Robert

AU - Turner, Steve

AU - Khanal, Sudeepa

AU - van der Molen, Thys

AU - Kovacevic, Tomi

N1 - Copyright the Author(s). Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

PY - 2021

Y1 - 2021

N2 - Purpose There remains a need for a standardized dataset for respiratory studies to accelerate data collection, improve research efficiency and aid the sharing, merging and comparison of datasets. This TORPEDO (Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes) project aimed to develop a checklist of optimum and minimum variables for asthma and chronic obstructive pulmonary disease (COPD) research.Methods A 3-phase modified Delphi survey was conducted: in phase 1, an expert panel generated a list of variables, in phase 2 a Delphi panel selected the minimum variables (>66% agreement) for any design and in phase 3 they were asked to select a minimum set for specific study designs.Results In phase 1 the expert panel (n=22) proposed 224 variables. In phase 2, voting by 64 participants resulted in consensus (>66% agreement) for 18 variables and partial agreement (50-66%) for 44 variables, following this, 5 technical variables (e.g. date of test) were removed. In phase 3, 34 members of the Delphi panel completed voting; consensus was reached for 13 variables for retrospective asthma studies and 34 for prospective asthma studies. For COPD, there were 16 variables for retrospective studies and 37 for prospective studies. Gender, asthma/COPD exacerbations and patient-reported outcomes were the only variables with 100% agreement for both asthma and COPD studies.Conclusion The proposed list of minimally required variables will allow the assessment of current data sources for their utility in asthma and COPD studies, facilitate the merging of datasets, aid standardization of data collection and improve research efficiency.

AB - Purpose There remains a need for a standardized dataset for respiratory studies to accelerate data collection, improve research efficiency and aid the sharing, merging and comparison of datasets. This TORPEDO (Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes) project aimed to develop a checklist of optimum and minimum variables for asthma and chronic obstructive pulmonary disease (COPD) research.Methods A 3-phase modified Delphi survey was conducted: in phase 1, an expert panel generated a list of variables, in phase 2 a Delphi panel selected the minimum variables (>66% agreement) for any design and in phase 3 they were asked to select a minimum set for specific study designs.Results In phase 1 the expert panel (n=22) proposed 224 variables. In phase 2, voting by 64 participants resulted in consensus (>66% agreement) for 18 variables and partial agreement (50-66%) for 44 variables, following this, 5 technical variables (e.g. date of test) were removed. In phase 3, 34 members of the Delphi panel completed voting; consensus was reached for 13 variables for retrospective asthma studies and 34 for prospective asthma studies. For COPD, there were 16 variables for retrospective studies and 37 for prospective studies. Gender, asthma/COPD exacerbations and patient-reported outcomes were the only variables with 100% agreement for both asthma and COPD studies.Conclusion The proposed list of minimally required variables will allow the assessment of current data sources for their utility in asthma and COPD studies, facilitate the merging of datasets, aid standardization of data collection and improve research efficiency.

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DO - 10.1101/2021.10.14.21264843

M3 - Preprint

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BT - Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes (TORPEDO)

ER -

Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes (TORPEDO): identifying a core dataset for asthma and COPD studies

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