Standard

Thoracic outlet syndrome (TROTS) registry : A study protocol for the primary upper extremity deep venous thrombosis section. / TROTS registry collaborators.

In: PLoS ONE, Vol. 18, No. 1 January, e0279708, 06.01.2023.

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

Harvard

TROTS registry collaborators 2023, 'Thoracic outlet syndrome (TROTS) registry: A study protocol for the primary upper extremity deep venous thrombosis section', PLoS ONE, vol. 18, no. 1 January, e0279708. https://doi.org/10.1371/journal.pone.0279708

APA

TROTS registry collaborators (2023). Thoracic outlet syndrome (TROTS) registry: A study protocol for the primary upper extremity deep venous thrombosis section. PLoS ONE, 18(1 January), [e0279708]. https://doi.org/10.1371/journal.pone.0279708

Vancouver

TROTS registry collaborators. Thoracic outlet syndrome (TROTS) registry: A study protocol for the primary upper extremity deep venous thrombosis section. PLoS ONE. 2023 Jan 6;18(1 January):e0279708. doi: 10.1371/journal.pone.0279708

Author

TROTS registry collaborators. / Thoracic outlet syndrome (TROTS) registry : A study protocol for the primary upper extremity deep venous thrombosis section. In: PLoS ONE. 2023 ; Vol. 18, No. 1 January.

BibTeX

@article{654a1d49924b41d9a639c6a7013db6a3,
title = "Thoracic outlet syndrome (TROTS) registry: A study protocol for the primary upper extremity deep venous thrombosis section",
abstract = "Introduction There is a lack of comprehensive and uniform data on primary upper extremity deep venous thrombosis (pUEDVT). pUEDVT includes venous thoracic outlet syndrome related upper extremity deep venous thrombosis (UEDVT) and idiopathic UEDVT. Research on these conditions has been hampered by their rarity, lack of uniform diagnostic criteria, and heterogeneity in therapeutic strategies. To improve current research data collection using input of all various pUEDVT treating medical specialists, we initiated the ThoRacic OuTlet Syndrome (TROTS) registry. The aim of the TROTS registry is to a) collect extensive data on all pUEDVT patients through a predefined protocol, b) give insight in the long term outcome using patient reported outcome measures, c) create guidance in the diagnostic and clinical management of these conditions, and thereby d) help provide content for future research. Methods and analysis The TROTS registry was designed as an international prospective longitudinal observational registry for data collection on pUEDVT patients. All pUEDVT patients, regardless of treatment received, can be included in the registry after informed consent is obtained. All relevant data regarding the initial presentation, diagnostics, treatment, and follow-up will be collected prospectively in an electronic case report form. In addition, a survey containing general questions, a Health-related Quality of Life questionnaire (EQ-5D-5L), and Functional Disability questionnaire (Quick-DASH) will be sent periodically (at the time of inclusion, one and two years after inclusion, and every five years after inclusion) to the participant. The registry protocol was approved by the Medical Ethical Review Board and registered in the Netherlands Trial Register under Trial-ID NL9680. The data generated by the registry will be used for future research on pUEDVT and published in peer reviewed journals. Conclusion TROTS registry data will be used to further establish the optimal management of pUEDVT and lay the foundation for future research and guidelines.",
author = "Ludo Schropp and {de Kleijn}, {Robert J. C. M. F.} and Jan Westerink and Mathilde Nijkeuter and Evert-Jan Vonken and {van der Schaaf}, {Irene C.} and Goedee, {H. Stephan} and Vrancken, {Alexander F. J. E.} and {van Hattum}, {Eline S.} and Bart-Jeroen Petri and {de Borst}, {Gert J.} and {\c C}ağda{\c s} {\"U}nl{\"u} and Bemelmans, {Remy H. H.} and Westerweel, {Peter E.} and Maarten Lijkwan and Esselink, {Anne C.} and Bode, {Aron S.} and Msc, {Hinke Nagtegaal} and {ten Cate}, Arina and {van Laanen}, Jorinde and {van der Veer}, Arian and {van Weel}, Vincent and Mol, {Gerben C.} and Jasper Florie and Faber, {Daniel R.} and {de Vries}, {Jeroen K.} and {van de Mortel}, {Robertus H. W.} and Marijke Molegraaf and Vincent Jongkind and Kakkhee Yeung and Michiel Coppens and {van der Bogt}, {Koen E. A.} and Beishuizen, {Edith D.} and {van Ommen}, {C. Heleen} and Kruip, {Marieke J. H. A.} and {van Rijn}, {Marie Josee E.} and {van Bemmel}, Thomas and Klemm, {Peter L.} and Hovens, {Marcel M. C.} and {van Schaik}, {Paul M.} and Matthijs Eefting and {van Well}, {Anne M. E.} and {van Nieuwenhuizen}, {Roos C.} and {van Wissen}, Sanne and Willems, {Martine C. M.} and Post, {Judith P.} and Kleijwegt, {Fleur S.} and {TROTS registry collaborators} and Suijker, {Monique H.}",
note = "Publisher Copyright: {\textcopyright} 2023 Schropp et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.",
year = "2023",
month = jan,
day = "6",
doi = "10.1371/journal.pone.0279708",
language = "English",
volume = "18",
journal = "PLoS ONE",
issn = "1932-6203",
publisher = "Public Library of Science",
number = "1 January",

}

RIS

TY - JOUR

T1 - Thoracic outlet syndrome (TROTS) registry

T2 - A study protocol for the primary upper extremity deep venous thrombosis section

AU - Schropp, Ludo

AU - de Kleijn, Robert J. C. M. F.

AU - Westerink, Jan

AU - Nijkeuter, Mathilde

AU - Vonken, Evert-Jan

AU - van der Schaaf, Irene C.

AU - Goedee, H. Stephan

AU - Vrancken, Alexander F. J. E.

AU - van Hattum, Eline S.

AU - Petri, Bart-Jeroen

AU - de Borst, Gert J.

AU - Ünlü, Çağdaş

AU - Bemelmans, Remy H. H.

AU - Westerweel, Peter E.

AU - Lijkwan, Maarten

AU - Esselink, Anne C.

AU - Bode, Aron S.

AU - Msc, Hinke Nagtegaal

AU - ten Cate, Arina

AU - van Laanen, Jorinde

AU - van der Veer, Arian

AU - van Weel, Vincent

AU - Mol, Gerben C.

AU - Florie, Jasper

AU - Faber, Daniel R.

AU - de Vries, Jeroen K.

AU - van de Mortel, Robertus H. W.

AU - Molegraaf, Marijke

AU - Jongkind, Vincent

AU - Yeung, Kakkhee

AU - Coppens, Michiel

AU - van der Bogt, Koen E. A.

AU - Beishuizen, Edith D.

AU - van Ommen, C. Heleen

AU - Kruip, Marieke J. H. A.

AU - van Rijn, Marie Josee E.

AU - van Bemmel, Thomas

AU - Klemm, Peter L.

AU - Hovens, Marcel M. C.

AU - van Schaik, Paul M.

AU - Eefting, Matthijs

AU - van Well, Anne M. E.

AU - van Nieuwenhuizen, Roos C.

AU - van Wissen, Sanne

AU - Willems, Martine C. M.

AU - Post, Judith P.

AU - Kleijwegt, Fleur S.

AU - TROTS registry collaborators

AU - Suijker, Monique H.

N1 - Publisher Copyright: © 2023 Schropp et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

PY - 2023/1/6

Y1 - 2023/1/6

N2 - Introduction There is a lack of comprehensive and uniform data on primary upper extremity deep venous thrombosis (pUEDVT). pUEDVT includes venous thoracic outlet syndrome related upper extremity deep venous thrombosis (UEDVT) and idiopathic UEDVT. Research on these conditions has been hampered by their rarity, lack of uniform diagnostic criteria, and heterogeneity in therapeutic strategies. To improve current research data collection using input of all various pUEDVT treating medical specialists, we initiated the ThoRacic OuTlet Syndrome (TROTS) registry. The aim of the TROTS registry is to a) collect extensive data on all pUEDVT patients through a predefined protocol, b) give insight in the long term outcome using patient reported outcome measures, c) create guidance in the diagnostic and clinical management of these conditions, and thereby d) help provide content for future research. Methods and analysis The TROTS registry was designed as an international prospective longitudinal observational registry for data collection on pUEDVT patients. All pUEDVT patients, regardless of treatment received, can be included in the registry after informed consent is obtained. All relevant data regarding the initial presentation, diagnostics, treatment, and follow-up will be collected prospectively in an electronic case report form. In addition, a survey containing general questions, a Health-related Quality of Life questionnaire (EQ-5D-5L), and Functional Disability questionnaire (Quick-DASH) will be sent periodically (at the time of inclusion, one and two years after inclusion, and every five years after inclusion) to the participant. The registry protocol was approved by the Medical Ethical Review Board and registered in the Netherlands Trial Register under Trial-ID NL9680. The data generated by the registry will be used for future research on pUEDVT and published in peer reviewed journals. Conclusion TROTS registry data will be used to further establish the optimal management of pUEDVT and lay the foundation for future research and guidelines.

AB - Introduction There is a lack of comprehensive and uniform data on primary upper extremity deep venous thrombosis (pUEDVT). pUEDVT includes venous thoracic outlet syndrome related upper extremity deep venous thrombosis (UEDVT) and idiopathic UEDVT. Research on these conditions has been hampered by their rarity, lack of uniform diagnostic criteria, and heterogeneity in therapeutic strategies. To improve current research data collection using input of all various pUEDVT treating medical specialists, we initiated the ThoRacic OuTlet Syndrome (TROTS) registry. The aim of the TROTS registry is to a) collect extensive data on all pUEDVT patients through a predefined protocol, b) give insight in the long term outcome using patient reported outcome measures, c) create guidance in the diagnostic and clinical management of these conditions, and thereby d) help provide content for future research. Methods and analysis The TROTS registry was designed as an international prospective longitudinal observational registry for data collection on pUEDVT patients. All pUEDVT patients, regardless of treatment received, can be included in the registry after informed consent is obtained. All relevant data regarding the initial presentation, diagnostics, treatment, and follow-up will be collected prospectively in an electronic case report form. In addition, a survey containing general questions, a Health-related Quality of Life questionnaire (EQ-5D-5L), and Functional Disability questionnaire (Quick-DASH) will be sent periodically (at the time of inclusion, one and two years after inclusion, and every five years after inclusion) to the participant. The registry protocol was approved by the Medical Ethical Review Board and registered in the Netherlands Trial Register under Trial-ID NL9680. The data generated by the registry will be used for future research on pUEDVT and published in peer reviewed journals. Conclusion TROTS registry data will be used to further establish the optimal management of pUEDVT and lay the foundation for future research and guidelines.

UR - http://www.scopus.com/inward/record.url?scp=85145932200&partnerID=8YFLogxK

U2 - 10.1371/journal.pone.0279708

DO - 10.1371/journal.pone.0279708

M3 - Article

C2 - 36608058

VL - 18

JO - PLoS ONE

JF - PLoS ONE

SN - 1932-6203

IS - 1 January

M1 - e0279708

ER -

ID: 30839928