Challenges and solutions to complex data governance issues in cross-national, cross-sectoral, multidisciplinary real world health research: a descriptive overview

Miriam Galvin; Mark Heverin; Éanna Mac Domhnaill; Robert Mcfarlane; Dara Meldrum; Deirdre Murray; Anthony Bolger; Julie Connelly; Kieran Flynn; Evelyn Fox; Frances Gibbons; Lucy Hederman; Sinéad Impey; Imelda O’Keefe; Ciara O’Meara; Declan McKibben; Matthew Nicholson; Gaye Stephens; Jet Van Dijk; Leonard Van Den Berg; Orla Hardiman

doi:10.1080/21678421.2024.2428927

Challenges and solutions to complex data governance issues in cross-national, cross-sectoral, multidisciplinary real world health research: a descriptive overview

Miriam Galvin^*, Mark Heverin, Éanna Mac Domhnaill, Robert Mcfarlane, Dara Meldrum, Deirdre Murray, Anthony Bolger, Julie Connelly, Kieran Flynn, Evelyn Fox, Frances Gibbons, Lucy Hederman, Sinéad Impey, Imelda O’Keefe, Ciara O’Meara, Declan McKibben, Matthew Nicholson, Gaye Stephens, Jet Van Dijk, Leonard Van Den BergOrla Hardiman

^*Corresponding author for this work

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

Abstract

Real-world clinical data is generated during clinical engagements. The collection and further processing and mining of clinical information requires consents and navigation of necessary and important data governance processes. PRECISION ALS is an academic industry programme that collects, collates and analyses clinical and para-clinical data from patients with ALS across 10 European sites. The infrastructure of PRECISION ALS represents a complex interplay of the clinical, governance, and technical frameworks. Incorporation of infrastructural and operational measures enables sophisticated cross-national, cross-sectoral and cross disciplinary health research. PRECISION ALS has established a range of domain expertise, technologies, governance and clinical data management practices that can be applied throughout the life cycle of patient data from generation, collation, delivery and secure storage for advanced analytics. PRECISION ALS is designed to move the field of ALS research to a true Precision Medicine based approach toward new and more effective therapeutics.

Original language	English
Pages (from-to)	1-7
Number of pages	7
Journal	Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Volume	26
Issue number	sup1
Early online date	1 Mar 2025
DOIs	https://doi.org/10.1080/21678421.2024.2428927
Publication status	Published - 2025

Keywords

ALS
data
governance
institution
operational
research
technical

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Challenges and solutions to complex data governance issues in cross-national cross-sectoral multidisciplinary real world health research a descriptFinal published version, 1.14 MBLicence: CC BY

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Galvin, M., Heverin, M., Mac Domhnaill, É., Mcfarlane, R., Meldrum, D., Murray, D., Bolger, A., Connelly, J., Flynn, K., Fox, E., Gibbons, F., Hederman, L., Impey, S., O’Keefe, I., O’Meara, C., McKibben, D., Nicholson, M., Stephens, G., Van Dijk, J., ... Hardiman, O. (2025). Challenges and solutions to complex data governance issues in cross-national, cross-sectoral, multidisciplinary real world health research: a descriptive overview. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 26(sup1), 1-7. https://doi.org/10.1080/21678421.2024.2428927

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abstract = "Real-world clinical data is generated during clinical engagements. The collection and further processing and mining of clinical information requires consents and navigation of necessary and important data governance processes. PRECISION ALS is an academic industry programme that collects, collates and analyses clinical and para-clinical data from patients with ALS across 10 European sites. The infrastructure of PRECISION ALS represents a complex interplay of the clinical, governance, and technical frameworks. Incorporation of infrastructural and operational measures enables sophisticated cross-national, cross-sectoral and cross disciplinary health research. PRECISION ALS has established a range of domain expertise, technologies, governance and clinical data management practices that can be applied throughout the life cycle of patient data from generation, collation, delivery and secure storage for advanced analytics. PRECISION ALS is designed to move the field of ALS research to a true Precision Medicine based approach toward new and more effective therapeutics.",

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author = "Miriam Galvin and Mark Heverin and {Mac Domhnaill}, {\'E}anna and Robert Mcfarlane and Dara Meldrum and Deirdre Murray and Anthony Bolger and Julie Connelly and Kieran Flynn and Evelyn Fox and Frances Gibbons and Lucy Hederman and Sin{\'e}ad Impey and Imelda O{\textquoteright}Keefe and Ciara O{\textquoteright}Meara and Declan McKibben and Matthew Nicholson and Gaye Stephens and {Van Dijk}, Jet and {Van Den Berg}, Leonard and Orla Hardiman",

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year = "2025",

doi = "10.1080/21678421.2024.2428927",

language = "English",

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Galvin, M, Heverin, M, Mac Domhnaill, É, Mcfarlane, R, Meldrum, D, Murray, D, Bolger, A, Connelly, J, Flynn, K, Fox, E, Gibbons, F, Hederman, L, Impey, S, O’Keefe, I, O’Meara, C, McKibben, D, Nicholson, M, Stephens, G, Van Dijk, J, Van Den Berg, L & Hardiman, O 2025, 'Challenges and solutions to complex data governance issues in cross-national, cross-sectoral, multidisciplinary real world health research: a descriptive overview', Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, vol. 26, no. sup1, pp. 1-7. https://doi.org/10.1080/21678421.2024.2428927

Challenges and solutions to complex data governance issues in cross-national, cross-sectoral, multidisciplinary real world health research: a descriptive overview. / Galvin, Miriam; Heverin, Mark; Mac Domhnaill, Éanna et al.
In: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, Vol. 26, No. sup1, 2025, p. 1-7.

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

TY - JOUR

T1 - Challenges and solutions to complex data governance issues in cross-national, cross-sectoral, multidisciplinary real world health research

T2 - a descriptive overview

AU - Galvin, Miriam

AU - Heverin, Mark

AU - Mac Domhnaill, Éanna

AU - Mcfarlane, Robert

AU - Meldrum, Dara

AU - Murray, Deirdre

AU - Bolger, Anthony

AU - Connelly, Julie

AU - Flynn, Kieran

AU - Fox, Evelyn

AU - Gibbons, Frances

AU - Hederman, Lucy

AU - Impey, Sinéad

AU - O’Keefe, Imelda

AU - O’Meara, Ciara

AU - McKibben, Declan

AU - Nicholson, Matthew

AU - Stephens, Gaye

AU - Van Dijk, Jet

AU - Van Den Berg, Leonard

AU - Hardiman, Orla

PY - 2025

Y1 - 2025

N2 - Real-world clinical data is generated during clinical engagements. The collection and further processing and mining of clinical information requires consents and navigation of necessary and important data governance processes. PRECISION ALS is an academic industry programme that collects, collates and analyses clinical and para-clinical data from patients with ALS across 10 European sites. The infrastructure of PRECISION ALS represents a complex interplay of the clinical, governance, and technical frameworks. Incorporation of infrastructural and operational measures enables sophisticated cross-national, cross-sectoral and cross disciplinary health research. PRECISION ALS has established a range of domain expertise, technologies, governance and clinical data management practices that can be applied throughout the life cycle of patient data from generation, collation, delivery and secure storage for advanced analytics. PRECISION ALS is designed to move the field of ALS research to a true Precision Medicine based approach toward new and more effective therapeutics.

AB - Real-world clinical data is generated during clinical engagements. The collection and further processing and mining of clinical information requires consents and navigation of necessary and important data governance processes. PRECISION ALS is an academic industry programme that collects, collates and analyses clinical and para-clinical data from patients with ALS across 10 European sites. The infrastructure of PRECISION ALS represents a complex interplay of the clinical, governance, and technical frameworks. Incorporation of infrastructural and operational measures enables sophisticated cross-national, cross-sectoral and cross disciplinary health research. PRECISION ALS has established a range of domain expertise, technologies, governance and clinical data management practices that can be applied throughout the life cycle of patient data from generation, collation, delivery and secure storage for advanced analytics. PRECISION ALS is designed to move the field of ALS research to a true Precision Medicine based approach toward new and more effective therapeutics.

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KW - data

KW - governance

KW - institution

KW - operational

KW - research

KW - technical

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U2 - 10.1080/21678421.2024.2428927

DO - 10.1080/21678421.2024.2428927

M3 - Article

C2 - 40022581

AN - SCOPUS:86000269327

SN - 2167-8421

VL - 26

SP - 1

EP - 7

JO - Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

JF - Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

IS - sup1

ER -

Galvin M, Heverin M, Mac Domhnaill É, Mcfarlane R, Meldrum D, Murray D et al. Challenges and solutions to complex data governance issues in cross-national, cross-sectoral, multidisciplinary real world health research: a descriptive overview. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2025;26(sup1):1-7. Epub 2025 Mar 1. doi: 10.1080/21678421.2024.2428927

Challenges and solutions to complex data governance issues in cross-national, cross-sectoral, multidisciplinary real world health research: a descriptive overview

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Keywords

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