Development of a consensus core dataset in juvenile dermatomyositis for clinical use to inform research

Liza J. McCann, Clarissa A. Pilkington, Adam M. Huber, Angelo Ravelli, Duncan Appelbe, Jamie J. Kirkham, Paula R. Williamson, Amita Aggarwal, Lisa Christopher-Stine, T. Constantin, Brian M. Feldman, Ingrid Lundberg, Sue Maillard, Pernille Mathiesen, Ruth Murphy, Lauren M. Pachman, Ann M. Reed, Lisa G. Rider, Annet Van Royen-Kerkof, Ricardo Russo & 3 others Stefan Spinty, Lucy R. Wedderburn, Michael W. Beresford

Research output: Article

6 Citations (Scopus)

Abstract

Objectives: This study aimed to develop consensus on an internationally agreed dataset for juvenile dermatomyositis (JDM), designed for clinical use, to enhance collaborative research and allow integration of data between centres. Methods: A prototype dataset was developed through a formal process that included analysing items within existing databases of patients with idiopathic inflammatory myopathies. This template was used to aid a structured multistage consensus process. Exploiting Delphi methodology, two web-based questionnaires were distributed to healthcare professionals caring for patients with JDM identified through email distribution lists of international paediatric rheumatology and myositis research groups. A separate questionnaire was sent to parents of children with JDM and patients with JDM, identified through established research networks and patient support groups. The results of these parallel processes informed a face-to-face nominal group consensus meeting of international myositis experts, tasked with defining the content of the dataset. This developed dataset was tested in routine clinical practice before review and finalisation. Results: A dataset containing 123 items was formulated with an accompanying glossary. Demographic and diagnostic data are contained within form A collected at baseline visit only, disease activity measures are included within form B collected at every visit and disease damage items within form C collected at baseline and annual visits thereafter. Conclusions: Through a robust international process, a consensus dataset for JDM has been formulated that can capture disease activity and damage over time. This dataset can be incorporated into national and international collaborative efforts, including existing clinical research databases.

Original languageEnglish
Pages (from-to)241-250
Number of pages10
JournalAnnals of the Rheumatic Diseases
Volume77
Issue number2
DOIs
Publication statusPublished - febr. 1 2018

Fingerprint

Consensus
Myositis
Research
Pediatrics
Electronic mail
Glossaries
Databases
Group Processes
Self-Help Groups
Rheumatology
Juvenile dermatomyositis
Datasets
Parents
Demography
Delivery of Health Care

ASJC Scopus subject areas

  • Rheumatology
  • Immunology and Allergy
  • Immunology
  • Biochemistry, Genetics and Molecular Biology(all)

Cite this

McCann, L. J., Pilkington, C. A., Huber, A. M., Ravelli, A., Appelbe, D., Kirkham, J. J., ... Beresford, M. W. (2018). Development of a consensus core dataset in juvenile dermatomyositis for clinical use to inform research. Annals of the Rheumatic Diseases, 77(2), 241-250. https://doi.org/10.1136/annrheumdis-2017-212141

Development of a consensus core dataset in juvenile dermatomyositis for clinical use to inform research. / McCann, Liza J.; Pilkington, Clarissa A.; Huber, Adam M.; Ravelli, Angelo; Appelbe, Duncan; Kirkham, Jamie J.; Williamson, Paula R.; Aggarwal, Amita; Christopher-Stine, Lisa; Constantin, T.; Feldman, Brian M.; Lundberg, Ingrid; Maillard, Sue; Mathiesen, Pernille; Murphy, Ruth; Pachman, Lauren M.; Reed, Ann M.; Rider, Lisa G.; Van Royen-Kerkof, Annet; Russo, Ricardo; Spinty, Stefan; Wedderburn, Lucy R.; Beresford, Michael W.

In: Annals of the Rheumatic Diseases, Vol. 77, No. 2, 01.02.2018, p. 241-250.

Research output: Article

McCann, LJ, Pilkington, CA, Huber, AM, Ravelli, A, Appelbe, D, Kirkham, JJ, Williamson, PR, Aggarwal, A, Christopher-Stine, L, Constantin, T, Feldman, BM, Lundberg, I, Maillard, S, Mathiesen, P, Murphy, R, Pachman, LM, Reed, AM, Rider, LG, Van Royen-Kerkof, A, Russo, R, Spinty, S, Wedderburn, LR & Beresford, MW 2018, 'Development of a consensus core dataset in juvenile dermatomyositis for clinical use to inform research', Annals of the Rheumatic Diseases, vol. 77, no. 2, pp. 241-250. https://doi.org/10.1136/annrheumdis-2017-212141
McCann, Liza J. ; Pilkington, Clarissa A. ; Huber, Adam M. ; Ravelli, Angelo ; Appelbe, Duncan ; Kirkham, Jamie J. ; Williamson, Paula R. ; Aggarwal, Amita ; Christopher-Stine, Lisa ; Constantin, T. ; Feldman, Brian M. ; Lundberg, Ingrid ; Maillard, Sue ; Mathiesen, Pernille ; Murphy, Ruth ; Pachman, Lauren M. ; Reed, Ann M. ; Rider, Lisa G. ; Van Royen-Kerkof, Annet ; Russo, Ricardo ; Spinty, Stefan ; Wedderburn, Lucy R. ; Beresford, Michael W. / Development of a consensus core dataset in juvenile dermatomyositis for clinical use to inform research. In: Annals of the Rheumatic Diseases. 2018 ; Vol. 77, No. 2. pp. 241-250.
@article{a142429130dc4aa28c47ad7c72c7d972,
title = "Development of a consensus core dataset in juvenile dermatomyositis for clinical use to inform research",
abstract = "Objectives: This study aimed to develop consensus on an internationally agreed dataset for juvenile dermatomyositis (JDM), designed for clinical use, to enhance collaborative research and allow integration of data between centres. Methods: A prototype dataset was developed through a formal process that included analysing items within existing databases of patients with idiopathic inflammatory myopathies. This template was used to aid a structured multistage consensus process. Exploiting Delphi methodology, two web-based questionnaires were distributed to healthcare professionals caring for patients with JDM identified through email distribution lists of international paediatric rheumatology and myositis research groups. A separate questionnaire was sent to parents of children with JDM and patients with JDM, identified through established research networks and patient support groups. The results of these parallel processes informed a face-to-face nominal group consensus meeting of international myositis experts, tasked with defining the content of the dataset. This developed dataset was tested in routine clinical practice before review and finalisation. Results: A dataset containing 123 items was formulated with an accompanying glossary. Demographic and diagnostic data are contained within form A collected at baseline visit only, disease activity measures are included within form B collected at every visit and disease damage items within form C collected at baseline and annual visits thereafter. Conclusions: Through a robust international process, a consensus dataset for JDM has been formulated that can capture disease activity and damage over time. This dataset can be incorporated into national and international collaborative efforts, including existing clinical research databases.",
author = "McCann, {Liza J.} and Pilkington, {Clarissa A.} and Huber, {Adam M.} and Angelo Ravelli and Duncan Appelbe and Kirkham, {Jamie J.} and Williamson, {Paula R.} and Amita Aggarwal and Lisa Christopher-Stine and T. Constantin and Feldman, {Brian M.} and Ingrid Lundberg and Sue Maillard and Pernille Mathiesen and Ruth Murphy and Pachman, {Lauren M.} and Reed, {Ann M.} and Rider, {Lisa G.} and {Van Royen-Kerkof}, Annet and Ricardo Russo and Stefan Spinty and Wedderburn, {Lucy R.} and Beresford, {Michael W.}",
year = "2018",
month = "2",
day = "1",
doi = "10.1136/annrheumdis-2017-212141",
language = "English",
volume = "77",
pages = "241--250",
journal = "Annals of the Rheumatic Diseases",
issn = "0003-4967",
publisher = "BMJ Publishing Group",
number = "2",

}

TY - JOUR

T1 - Development of a consensus core dataset in juvenile dermatomyositis for clinical use to inform research

AU - McCann, Liza J.

AU - Pilkington, Clarissa A.

AU - Huber, Adam M.

AU - Ravelli, Angelo

AU - Appelbe, Duncan

AU - Kirkham, Jamie J.

AU - Williamson, Paula R.

AU - Aggarwal, Amita

AU - Christopher-Stine, Lisa

AU - Constantin, T.

AU - Feldman, Brian M.

AU - Lundberg, Ingrid

AU - Maillard, Sue

AU - Mathiesen, Pernille

AU - Murphy, Ruth

AU - Pachman, Lauren M.

AU - Reed, Ann M.

AU - Rider, Lisa G.

AU - Van Royen-Kerkof, Annet

AU - Russo, Ricardo

AU - Spinty, Stefan

AU - Wedderburn, Lucy R.

AU - Beresford, Michael W.

PY - 2018/2/1

Y1 - 2018/2/1

N2 - Objectives: This study aimed to develop consensus on an internationally agreed dataset for juvenile dermatomyositis (JDM), designed for clinical use, to enhance collaborative research and allow integration of data between centres. Methods: A prototype dataset was developed through a formal process that included analysing items within existing databases of patients with idiopathic inflammatory myopathies. This template was used to aid a structured multistage consensus process. Exploiting Delphi methodology, two web-based questionnaires were distributed to healthcare professionals caring for patients with JDM identified through email distribution lists of international paediatric rheumatology and myositis research groups. A separate questionnaire was sent to parents of children with JDM and patients with JDM, identified through established research networks and patient support groups. The results of these parallel processes informed a face-to-face nominal group consensus meeting of international myositis experts, tasked with defining the content of the dataset. This developed dataset was tested in routine clinical practice before review and finalisation. Results: A dataset containing 123 items was formulated with an accompanying glossary. Demographic and diagnostic data are contained within form A collected at baseline visit only, disease activity measures are included within form B collected at every visit and disease damage items within form C collected at baseline and annual visits thereafter. Conclusions: Through a robust international process, a consensus dataset for JDM has been formulated that can capture disease activity and damage over time. This dataset can be incorporated into national and international collaborative efforts, including existing clinical research databases.

AB - Objectives: This study aimed to develop consensus on an internationally agreed dataset for juvenile dermatomyositis (JDM), designed for clinical use, to enhance collaborative research and allow integration of data between centres. Methods: A prototype dataset was developed through a formal process that included analysing items within existing databases of patients with idiopathic inflammatory myopathies. This template was used to aid a structured multistage consensus process. Exploiting Delphi methodology, two web-based questionnaires were distributed to healthcare professionals caring for patients with JDM identified through email distribution lists of international paediatric rheumatology and myositis research groups. A separate questionnaire was sent to parents of children with JDM and patients with JDM, identified through established research networks and patient support groups. The results of these parallel processes informed a face-to-face nominal group consensus meeting of international myositis experts, tasked with defining the content of the dataset. This developed dataset was tested in routine clinical practice before review and finalisation. Results: A dataset containing 123 items was formulated with an accompanying glossary. Demographic and diagnostic data are contained within form A collected at baseline visit only, disease activity measures are included within form B collected at every visit and disease damage items within form C collected at baseline and annual visits thereafter. Conclusions: Through a robust international process, a consensus dataset for JDM has been formulated that can capture disease activity and damage over time. This dataset can be incorporated into national and international collaborative efforts, including existing clinical research databases.

UR - http://www.scopus.com/inward/record.url?scp=85041537394&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85041537394&partnerID=8YFLogxK

U2 - 10.1136/annrheumdis-2017-212141

DO - 10.1136/annrheumdis-2017-212141

M3 - Article

VL - 77

SP - 241

EP - 250

JO - Annals of the Rheumatic Diseases

JF - Annals of the Rheumatic Diseases

SN - 0003-4967

IS - 2

ER -