Commonalities and differences in set-up and data collection across European spondyloarthritis registries:  results from the EuroSpA collaboration

Louise Linde; Lykke M Ørnbjerg; Simon H Rasmussen; Thorvardur Jon Love; Anne Gitte Loft; Jakub Závada; Jiří Vencovský; Karin Laas; Dan Nordstrom; Tuulikki Sokka-Isler; Bjorn Gudbjornsson; Gerdur Gröndal; Florenzo Iannone; Roberta Ramonda; Pasoon Hellamand; Eirik K Kristianslund; Tore K Kvien; Ana M Rodrigues; Maria J Santos; Catalin Codreanu; Ziga Rotar; Matija Tomšič; Isabel Castrejon; Federico Díaz-Gonzáles; Daniela Di Giuseppe; Lotta Ljung; Michael J Nissen; Adrian Ciurea; Gary J Macfarlane; Maureen Heddle; Bente Glintborg; Mikkel Østergaard; Merete L Hetland

doi:10.1186/s13075-023-03184-7

Commonalities and differences in set-up and data collection across European spondyloarthritis registries: results from the EuroSpA collaboration

Louise Linde^* (Corresponding Author), Lykke M Ørnbjerg, Simon H Rasmussen, Thorvardur Jon Love, Anne Gitte Loft, Jakub Závada, Jiří Vencovský, Karin Laas, Dan Nordstrom, Tuulikki Sokka-Isler, Bjorn Gudbjornsson, Gerdur Gröndal, Florenzo Iannone, Roberta Ramonda, Pasoon Hellamand, Eirik K Kristianslund, Tore K Kvien, Ana M Rodrigues, Maria J Santos, Catalin CodreanuZiga Rotar, Matija Tomšič, Isabel Castrejon, Federico Díaz-Gonzáles, Daniela Di Giuseppe, Lotta Ljung, Michael J Nissen, Adrian Ciurea, Gary J Macfarlane, Maureen Heddle, Bente Glintborg, Mikkel Østergaard, Merete L Hetland

^*Corresponding author for this work

Applied Health Sciences

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

1 Citation (Scopus)

Abstract

BACKGROUND: In European axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) clinical registries, we aimed to investigate commonalities and differences in (1) set-up, clinical data collection; (2) data availability and completeness; and (3) wording, recall period, and scale used for selected patient-reported outcome measures (PROMs).

METHODS: Data was obtained as part of the EuroSpA Research Collaboration Network and consisted of (1) an online survey and follow-up interview, (2) upload of real-world data, and (3) selected PROMs included in the online survey.

RESULTS: Fifteen registries participated, contributing 33,948 patients (axSpA: 21,330 (63%), PsA: 12,618 (37%)). The reported coverage of eligible patients ranged from 0.5 to 100%. Information on age, sex, biological/targeted synthetic disease-modifying anti-rheumatic drug treatment, disease duration, and C-reactive protein was available in all registries with data completeness between 85% and 100%. All PROMs (Bath Ankylosing Spondylitis Disease Activity and Functional Indices, Health Assessment Questionnaire, and patient global, pain and fatigue assessments) were more complete after 2015 (68-86%) compared to prior (50-79%). Patient global, pain and fatigue assessments showed heterogeneity between registries in terms of wording, recall periods, and scale.

CONCLUSION: Important heterogeneity in registry design and data collection across fifteen European axSpA and PsA registries was observed. Several core measures were widely available, and an increase in data completeness of PROMs in recent years was identified. This study might serve as a basis for examining how differences in data collection across registries may impact the results of collaborative research in the future.

Original language	English
Article number	205
Number of pages	14
Journal	Arthritis Research & Therapy
Volume	25
DOIs	https://doi.org/10.1186/s13075-023-03184-7
Publication status	Published - 19 Oct 2023

Bibliographical note

Funding
Open access funding provided by Royal Library, Copenhagen University Library The EuroSpA Research Collaboration Network was financially supported by Novartis Pharma AG. Novartis had no influence on the data collection, statistical analyses, manuscript preparation or decision to submit the manuscript.

Data Availability Statement

The data in this article was collected in the individual registries and made available for secondary use through the EuroSpA Research Collaboration Network [https://eurospa.eu/#registries] Relevant patient-level data may be made available on reasonable request to the corresponding author, but will require approval from all contributing registries.

Keywords

Humans
Arthritis, Psoriatic/drug therapy
Spondylarthritis/drug therapy
Spondylitis, Ankylosing/drug therapy
Registries
Pain
European registries
clinical data collection
real-world evidence
collaborative research

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Cite this

Linde, L., Ørnbjerg, L. M., Rasmussen, S. H., Love, T. J., Loft, A. G., Závada, J., Vencovský, J., Laas, K., Nordstrom, D., Sokka-Isler, T., Gudbjornsson, B., Gröndal, G., Iannone, F., Ramonda, R., Hellamand, P., Kristianslund, E. K., Kvien, T. K., Rodrigues, A. M., Santos, M. J., ... Hetland, M. L. (2023). Commonalities and differences in set-up and data collection across European spondyloarthritis registries: results from the EuroSpA collaboration. Arthritis Research & Therapy, 25, Article 205. https://doi.org/10.1186/s13075-023-03184-7

Linde, L, Ørnbjerg, LM, Rasmussen, SH, Love, TJ, Loft, AG, Závada, J, Vencovský, J, Laas, K, Nordstrom, D, Sokka-Isler, T, Gudbjornsson, B, Gröndal, G, Iannone, F, Ramonda, R, Hellamand, P, Kristianslund, EK, Kvien, TK, Rodrigues, AM, Santos, MJ, Codreanu, C, Rotar, Z, Tomšič, M, Castrejon, I, Díaz-Gonzáles, F, Di Giuseppe, D, Ljung, L, Nissen, MJ, Ciurea, A, Macfarlane, GJ, Heddle, M, Glintborg, B, Østergaard, M & Hetland, ML 2023, 'Commonalities and differences in set-up and data collection across European spondyloarthritis registries: results from the EuroSpA collaboration', Arthritis Research & Therapy, vol. 25, 205. https://doi.org/10.1186/s13075-023-03184-7

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title = "Commonalities and differences in set-up and data collection across European spondyloarthritis registries: results from the EuroSpA collaboration",

abstract = "BACKGROUND: In European axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) clinical registries, we aimed to investigate commonalities and differences in (1) set-up, clinical data collection; (2) data availability and completeness; and (3) wording, recall period, and scale used for selected patient-reported outcome measures (PROMs).METHODS: Data was obtained as part of the EuroSpA Research Collaboration Network and consisted of (1) an online survey and follow-up interview, (2) upload of real-world data, and (3) selected PROMs included in the online survey.RESULTS: Fifteen registries participated, contributing 33,948 patients (axSpA: 21,330 (63%), PsA: 12,618 (37%)). The reported coverage of eligible patients ranged from 0.5 to 100%. Information on age, sex, biological/targeted synthetic disease-modifying anti-rheumatic drug treatment, disease duration, and C-reactive protein was available in all registries with data completeness between 85% and 100%. All PROMs (Bath Ankylosing Spondylitis Disease Activity and Functional Indices, Health Assessment Questionnaire, and patient global, pain and fatigue assessments) were more complete after 2015 (68-86%) compared to prior (50-79%). Patient global, pain and fatigue assessments showed heterogeneity between registries in terms of wording, recall periods, and scale.CONCLUSION: Important heterogeneity in registry design and data collection across fifteen European axSpA and PsA registries was observed. Several core measures were widely available, and an increase in data completeness of PROMs in recent years was identified. This study might serve as a basis for examining how differences in data collection across registries may impact the results of collaborative research in the future.",

keywords = "Humans, Arthritis, Psoriatic/drug therapy, Spondylarthritis/drug therapy, Spondylitis, Ankylosing/drug therapy, Registries, Pain, European registries, clinical data collection, real-world evidence, collaborative research",

author = "Louise Linde and {\O}rnbjerg, {Lykke M} and Rasmussen, {Simon H} and Love, {Thorvardur Jon} and Loft, {Anne Gitte} and Jakub Z{\'a}vada and Ji{\v r}{\'i} Vencovsk{\'y} and Karin Laas and Dan Nordstrom and Tuulikki Sokka-Isler and Bjorn Gudbjornsson and Gerdur Gr{\"o}ndal and Florenzo Iannone and Roberta Ramonda and Pasoon Hellamand and Kristianslund, {Eirik K} and Kvien, {Tore K} and Rodrigues, {Ana M} and Santos, {Maria J} and Catalin Codreanu and Ziga Rotar and Matija Tom{\v s}i{\v c} and Isabel Castrejon and Federico D{\'i}az-Gonz{\'a}les and {Di Giuseppe}, Daniela and Lotta Ljung and Nissen, {Michael J} and Adrian Ciurea and Macfarlane, {Gary J} and Maureen Heddle and Bente Glintborg and Mikkel {\O}stergaard and Hetland, {Merete L}",

note = "Funding Open access funding provided by Royal Library, Copenhagen University Library The EuroSpA Research Collaboration Network was financially supported by Novartis Pharma AG. Novartis had no influence on the data collection, statistical analyses, manuscript preparation or decision to submit the manuscript.",

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month = oct,

day = "19",

doi = "10.1186/s13075-023-03184-7",

language = "English",

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TY - JOUR

T1 - Commonalities and differences in set-up and data collection across European spondyloarthritis registries

T2 - results from the EuroSpA collaboration

AU - Linde, Louise

AU - Ørnbjerg, Lykke M

AU - Rasmussen, Simon H

AU - Love, Thorvardur Jon

AU - Loft, Anne Gitte

AU - Závada, Jakub

AU - Vencovský, Jiří

AU - Laas, Karin

AU - Nordstrom, Dan

AU - Sokka-Isler, Tuulikki

AU - Gudbjornsson, Bjorn

AU - Gröndal, Gerdur

AU - Iannone, Florenzo

AU - Ramonda, Roberta

AU - Hellamand, Pasoon

AU - Kristianslund, Eirik K

AU - Kvien, Tore K

AU - Rodrigues, Ana M

AU - Santos, Maria J

AU - Codreanu, Catalin

AU - Rotar, Ziga

AU - Tomšič, Matija

AU - Castrejon, Isabel

AU - Díaz-Gonzáles, Federico

AU - Di Giuseppe, Daniela

AU - Ljung, Lotta

AU - Nissen, Michael J

AU - Ciurea, Adrian

AU - Macfarlane, Gary J

AU - Heddle, Maureen

AU - Glintborg, Bente

AU - Østergaard, Mikkel

AU - Hetland, Merete L

N1 - Funding Open access funding provided by Royal Library, Copenhagen University Library The EuroSpA Research Collaboration Network was financially supported by Novartis Pharma AG. Novartis had no influence on the data collection, statistical analyses, manuscript preparation or decision to submit the manuscript.

PY - 2023/10/19

Y1 - 2023/10/19

N2 - BACKGROUND: In European axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) clinical registries, we aimed to investigate commonalities and differences in (1) set-up, clinical data collection; (2) data availability and completeness; and (3) wording, recall period, and scale used for selected patient-reported outcome measures (PROMs).METHODS: Data was obtained as part of the EuroSpA Research Collaboration Network and consisted of (1) an online survey and follow-up interview, (2) upload of real-world data, and (3) selected PROMs included in the online survey.RESULTS: Fifteen registries participated, contributing 33,948 patients (axSpA: 21,330 (63%), PsA: 12,618 (37%)). The reported coverage of eligible patients ranged from 0.5 to 100%. Information on age, sex, biological/targeted synthetic disease-modifying anti-rheumatic drug treatment, disease duration, and C-reactive protein was available in all registries with data completeness between 85% and 100%. All PROMs (Bath Ankylosing Spondylitis Disease Activity and Functional Indices, Health Assessment Questionnaire, and patient global, pain and fatigue assessments) were more complete after 2015 (68-86%) compared to prior (50-79%). Patient global, pain and fatigue assessments showed heterogeneity between registries in terms of wording, recall periods, and scale.CONCLUSION: Important heterogeneity in registry design and data collection across fifteen European axSpA and PsA registries was observed. Several core measures were widely available, and an increase in data completeness of PROMs in recent years was identified. This study might serve as a basis for examining how differences in data collection across registries may impact the results of collaborative research in the future.

AB - BACKGROUND: In European axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) clinical registries, we aimed to investigate commonalities and differences in (1) set-up, clinical data collection; (2) data availability and completeness; and (3) wording, recall period, and scale used for selected patient-reported outcome measures (PROMs).METHODS: Data was obtained as part of the EuroSpA Research Collaboration Network and consisted of (1) an online survey and follow-up interview, (2) upload of real-world data, and (3) selected PROMs included in the online survey.RESULTS: Fifteen registries participated, contributing 33,948 patients (axSpA: 21,330 (63%), PsA: 12,618 (37%)). The reported coverage of eligible patients ranged from 0.5 to 100%. Information on age, sex, biological/targeted synthetic disease-modifying anti-rheumatic drug treatment, disease duration, and C-reactive protein was available in all registries with data completeness between 85% and 100%. All PROMs (Bath Ankylosing Spondylitis Disease Activity and Functional Indices, Health Assessment Questionnaire, and patient global, pain and fatigue assessments) were more complete after 2015 (68-86%) compared to prior (50-79%). Patient global, pain and fatigue assessments showed heterogeneity between registries in terms of wording, recall periods, and scale.CONCLUSION: Important heterogeneity in registry design and data collection across fifteen European axSpA and PsA registries was observed. Several core measures were widely available, and an increase in data completeness of PROMs in recent years was identified. This study might serve as a basis for examining how differences in data collection across registries may impact the results of collaborative research in the future.

KW - Humans

KW - Arthritis, Psoriatic/drug therapy

KW - Spondylarthritis/drug therapy

KW - Spondylitis, Ankylosing/drug therapy

KW - Registries

KW - Pain

KW - European registries

KW - clinical data collection

KW - real-world evidence

KW - collaborative research

U2 - 10.1186/s13075-023-03184-7

DO - 10.1186/s13075-023-03184-7

M3 - Article

C2 - 37858143

SN - 1478-6354

VL - 25

JO - Arthritis Research & Therapy

JF - Arthritis Research & Therapy

M1 - 205

ER -