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Study design and rationale of the pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R)

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Study design and rationale of the pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R). / Sinning, Christoph; Zengin, Elvin; Diller, Gerhard-Paul; Onorati, Francesco; Castel, María-Angeles; Petit, Thibault; Chen, Yih-Sharng; Lo Rito, Mauro; Chiarello, Carmelina; Guillemain, Romain; Coniat, Karine Nubret-Le; Magnussen, Christina; Knappe, Dorit; Becher, Peter Moritz; Schrage, Benedikt; Smits, Jacqueline M; Metzner, Andreas; Knosalla, Christoph; Schoenrath, Felix; Miera, Oliver; Cho, Mi-Young; Weimann, Jessica; Goßling, Alina; Terzi, Amedeo; Amodeo, Antonio; Alfieri, Sara; Angeli, Emanuela; Ragni, Luca; Napoleone, Carlo Pace; Gerosa, Gino; Pradegan, Nicola; Rodrigus, Inez; Dumfarth, Julia; de Pauw, Michel; François, Katrien; Van Caenegem, Olivier; Ancion, Arnaut; Van Cleemput, Johan; Miličić, Davor; Moza, Ajay; Schenker, Peter; Thul, Josef; Steinmetz, Michael; Warnecke, Gregor; Ius, Fabio; Freyt, Susanne; Avsar, Murat; Sandhaus, Tim; Haneya, Assad; Eifert, Sandra; Saeed, Diyar; Borger, Michael; Welp, Henryk; Ablonczy, László; Schmack, Bastian; Ruhparwar, Arjang; Naito, Shiho; Hua, Xiaoqin; Fluschnik, Nina; Nies, Moritz; Keil, Laura; Senftinger, Juliana; Ismaili, Djemail; Kany, Shinwan; Csengeri, Dora; Cardillo, Massimo; Oliveti, Alessandra; Faggian, Giuseppe; Dorent, Richard; Jasseron, Carine; Blanco, Alicia Pérez; Márquez, José Manuel Sobrino; López-Vilella, Raquel; García-Álvarez, Ana; López, María Luz Polo; Rocafort, Alvaro Gonzalez; Fernández, Óscar González; Prieto-Arevalo, Raquel; Zatarain-Nicolás, Eduardo; Blanchart, Katrien; Boignard, Aude; Battistella, Pascal; Guendouz, Soulef; Houyel, Lucile; Para, Marylou; Flecher, Erwan; Gay, Arnaud; Épailly, Éric; Dambrin, Camille; Lam, Kaitlyn; Ka-Lai, Cally Ho; Cho, Yang Hyun; Choi, Jin-Oh; Kim, Jae-Joong; Coats, Louise; Crossland, David Steven; Mumford, Lisa; Hakmi, Samer; Sivathasan, Cumaraswamy; Fabritz, Larissa; Schubert, Stephan; Gummert, Jan; Hübler, Michael; Jacksch, Peter; Zuckermann, Andreas; Laufer, Günther; Baumgartner, Helmut; Giamberti, Alessandro; Reichenspurner, Hermann; Kirchhof, Paulus.

In: ESC HEART FAIL, Vol. 8, No. 6, 12.2021, p. 5542-5550.

Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

Harvard

Sinning, C, Zengin, E, Diller, G-P, Onorati, F, Castel, M-A, Petit, T, Chen, Y-S, Lo Rito, M, Chiarello, C, Guillemain, R, Coniat, KN-L, Magnussen, C, Knappe, D, Becher, PM, Schrage, B, Smits, JM, Metzner, A, Knosalla, C, Schoenrath, F, Miera, O, Cho, M-Y, Weimann, J, Goßling, A, Terzi, A, Amodeo, A, Alfieri, S, Angeli, E, Ragni, L, Napoleone, CP, Gerosa, G, Pradegan, N, Rodrigus, I, Dumfarth, J, de Pauw, M, François, K, Van Caenegem, O, Ancion, A, Van Cleemput, J, Miličić, D, Moza, A, Schenker, P, Thul, J, Steinmetz, M, Warnecke, G, Ius, F, Freyt, S, Avsar, M, Sandhaus, T, Haneya, A, Eifert, S, Saeed, D, Borger, M, Welp, H, Ablonczy, L, Schmack, B, Ruhparwar, A, Naito, S, Hua, X, Fluschnik, N, Nies, M, Keil, L, Senftinger, J, Ismaili, D, Kany, S, Csengeri, D, Cardillo, M, Oliveti, A, Faggian, G, Dorent, R, Jasseron, C, Blanco, AP, Márquez, JMS, López-Vilella, R, García-Álvarez, A, López, MLP, Rocafort, AG, Fernández, ÓG, Prieto-Arevalo, R, Zatarain-Nicolás, E, Blanchart, K, Boignard, A, Battistella, P, Guendouz, S, Houyel, L, Para, M, Flecher, E, Gay, A, Épailly, É, Dambrin, C, Lam, K, Ka-Lai, CH, Cho, YH, Choi, J-O, Kim, J-J, Coats, L, Crossland, DS, Mumford, L, Hakmi, S, Sivathasan, C, Fabritz, L, Schubert, S, Gummert, J, Hübler, M, Jacksch, P, Zuckermann, A, Laufer, G, Baumgartner, H, Giamberti, A, Reichenspurner, H & Kirchhof, P 2021, 'Study design and rationale of the pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R)', ESC HEART FAIL, vol. 8, no. 6, pp. 5542-5550. https://doi.org/10.1002/ehf2.13574

APA

Sinning, C., Zengin, E., Diller, G-P., Onorati, F., Castel, M-A., Petit, T., Chen, Y-S., Lo Rito, M., Chiarello, C., Guillemain, R., Coniat, K. N-L., Magnussen, C., Knappe, D., Becher, P. M., Schrage, B., Smits, J. M., Metzner, A., Knosalla, C., Schoenrath, F., ... Kirchhof, P. (2021). Study design and rationale of the pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R). ESC HEART FAIL, 8(6), 5542-5550. https://doi.org/10.1002/ehf2.13574

Vancouver

Sinning C, Zengin E, Diller G-P, Onorati F, Castel M-A, Petit T et al. Study design and rationale of the pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R). ESC HEART FAIL. 2021 Dec;8(6):5542-5550. https://doi.org/10.1002/ehf2.13574

Bibtex

@article{c85aa4911b17486c877ee687b6890de1,
title = "Study design and rationale of the pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R)",
abstract = "AIM: Due to improved therapy in childhood, many patients with congenital heart disease reach adulthood and are termed adults with congenital heart disease (ACHD). ACHD often develop heart failure (HF) as a consequence of initial palliative surgery or complex anatomy and subsequently require advanced HF therapy. ACHD are usually excluded from trials evaluating heart failure therapies, and in this context, more data about heart failure trajectories in ACHD are needed to guide the management of ACHD suffering from HF.METHODS AND RESULTS: The pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R) will collect data from ACHD evaluated or listed for heart or heart-combined organ transplantation from 16 countries in Europe and the Asia/Pacific region. We plan retrospective collection of data from 1989-2020 and will include patients prospectively. Additional organizations and hospitals in charge of transplantation of ACHD will be asked in the future to contribute data to the register. The primary outcome is the combined endpoint of delisting due to clinical worsening or death on the waiting list. The secondary outcome is delisting due to clinical improvement while on the waiting list. All-cause mortality following transplantation will also be assessed. The data will be entered into an electronic database with access to the investigators participating in the register. All variables of the register reflect key components important for listing of the patients or assessing current HF treatment.CONCLUSION: The ARTORIA-R will provide robust information on current management and outcomes of adults with congenital heart disease suffering from advanced heart failure.",
author = "Christoph Sinning and Elvin Zengin and Gerhard-Paul Diller and Francesco Onorati and Mar{\'i}a-Angeles Castel and Thibault Petit and Yih-Sharng Chen and {Lo Rito}, Mauro and Carmelina Chiarello and Romain Guillemain and Coniat, {Karine Nubret-Le} and Christina Magnussen and Dorit Knappe and Becher, {Peter Moritz} and Benedikt Schrage and Smits, {Jacqueline M} and Andreas Metzner and Christoph Knosalla and Felix Schoenrath and Oliver Miera and Mi-Young Cho and Jessica Weimann and Alina Go{\ss}ling and Amedeo Terzi and Antonio Amodeo and Sara Alfieri and Emanuela Angeli and Luca Ragni and Napoleone, {Carlo Pace} and Gino Gerosa and Nicola Pradegan and Inez Rodrigus and Julia Dumfarth and {de Pauw}, Michel and Katrien Fran{\c c}ois and {Van Caenegem}, Olivier and Arnaut Ancion and {Van Cleemput}, Johan and Davor Mili{\v c}i{\'c} and Ajay Moza and Peter Schenker and Josef Thul and Michael Steinmetz and Gregor Warnecke and Fabio Ius and Susanne Freyt and Murat Avsar and Tim Sandhaus and Assad Haneya and Sandra Eifert and Diyar Saeed and Michael Borger and Henryk Welp and L{\'a}szl{\'o} Ablonczy and Bastian Schmack and Arjang Ruhparwar and Shiho Naito and Xiaoqin Hua and Nina Fluschnik and Moritz Nies and Laura Keil and Juliana Senftinger and Djemail Ismaili and Shinwan Kany and Dora Csengeri and Massimo Cardillo and Alessandra Oliveti and Giuseppe Faggian and Richard Dorent and Carine Jasseron and Blanco, {Alicia P{\'e}rez} and M{\'a}rquez, {Jos{\'e} Manuel Sobrino} and Raquel L{\'o}pez-Vilella and Ana Garc{\'i}a-{\'A}lvarez and L{\'o}pez, {Mar{\'i}a Luz Polo} and Rocafort, {Alvaro Gonzalez} and Fern{\'a}ndez, {{\'O}scar Gonz{\'a}lez} and Raquel Prieto-Arevalo and Eduardo Zatarain-Nicol{\'a}s and Katrien Blanchart and Aude Boignard and Pascal Battistella and Soulef Guendouz and Lucile Houyel and Marylou Para and Erwan Flecher and Arnaud Gay and {\'E}ric {\'E}pailly and Camille Dambrin and Kaitlyn Lam and Ka-Lai, {Cally Ho} and Cho, {Yang Hyun} and Jin-Oh Choi and Jae-Joong Kim and Louise Coats and Crossland, {David Steven} and Lisa Mumford and Samer Hakmi and Cumaraswamy Sivathasan and Larissa Fabritz and Stephan Schubert and Jan Gummert and Michael H{\"u}bler and Peter Jacksch and Andreas Zuckermann and G{\"u}nther Laufer and Helmut Baumgartner and Alessandro Giamberti and Hermann Reichenspurner and Paulus Kirchhof",
note = "{\textcopyright} 2021 The Authors. ESC Heart Failure published by John Wiley & Sons Ltd on behalf of European Society of Cardiology.",
year = "2021",
month = dec,
doi = "10.1002/ehf2.13574",
language = "English",
volume = "8",
pages = "5542--5550",
journal = "ESC HEART FAIL",
issn = "2055-5822",
publisher = "The Heart Failure Association of the European Society of Cardiology",
number = "6",

}

RIS

TY - JOUR

T1 - Study design and rationale of the pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R)

AU - Sinning, Christoph

AU - Zengin, Elvin

AU - Diller, Gerhard-Paul

AU - Onorati, Francesco

AU - Castel, María-Angeles

AU - Petit, Thibault

AU - Chen, Yih-Sharng

AU - Lo Rito, Mauro

AU - Chiarello, Carmelina

AU - Guillemain, Romain

AU - Coniat, Karine Nubret-Le

AU - Magnussen, Christina

AU - Knappe, Dorit

AU - Becher, Peter Moritz

AU - Schrage, Benedikt

AU - Smits, Jacqueline M

AU - Metzner, Andreas

AU - Knosalla, Christoph

AU - Schoenrath, Felix

AU - Miera, Oliver

AU - Cho, Mi-Young

AU - Weimann, Jessica

AU - Goßling, Alina

AU - Terzi, Amedeo

AU - Amodeo, Antonio

AU - Alfieri, Sara

AU - Angeli, Emanuela

AU - Ragni, Luca

AU - Napoleone, Carlo Pace

AU - Gerosa, Gino

AU - Pradegan, Nicola

AU - Rodrigus, Inez

AU - Dumfarth, Julia

AU - de Pauw, Michel

AU - François, Katrien

AU - Van Caenegem, Olivier

AU - Ancion, Arnaut

AU - Van Cleemput, Johan

AU - Miličić, Davor

AU - Moza, Ajay

AU - Schenker, Peter

AU - Thul, Josef

AU - Steinmetz, Michael

AU - Warnecke, Gregor

AU - Ius, Fabio

AU - Freyt, Susanne

AU - Avsar, Murat

AU - Sandhaus, Tim

AU - Haneya, Assad

AU - Eifert, Sandra

AU - Saeed, Diyar

AU - Borger, Michael

AU - Welp, Henryk

AU - Ablonczy, László

AU - Schmack, Bastian

AU - Ruhparwar, Arjang

AU - Naito, Shiho

AU - Hua, Xiaoqin

AU - Fluschnik, Nina

AU - Nies, Moritz

AU - Keil, Laura

AU - Senftinger, Juliana

AU - Ismaili, Djemail

AU - Kany, Shinwan

AU - Csengeri, Dora

AU - Cardillo, Massimo

AU - Oliveti, Alessandra

AU - Faggian, Giuseppe

AU - Dorent, Richard

AU - Jasseron, Carine

AU - Blanco, Alicia Pérez

AU - Márquez, José Manuel Sobrino

AU - López-Vilella, Raquel

AU - García-Álvarez, Ana

AU - López, María Luz Polo

AU - Rocafort, Alvaro Gonzalez

AU - Fernández, Óscar González

AU - Prieto-Arevalo, Raquel

AU - Zatarain-Nicolás, Eduardo

AU - Blanchart, Katrien

AU - Boignard, Aude

AU - Battistella, Pascal

AU - Guendouz, Soulef

AU - Houyel, Lucile

AU - Para, Marylou

AU - Flecher, Erwan

AU - Gay, Arnaud

AU - Épailly, Éric

AU - Dambrin, Camille

AU - Lam, Kaitlyn

AU - Ka-Lai, Cally Ho

AU - Cho, Yang Hyun

AU - Choi, Jin-Oh

AU - Kim, Jae-Joong

AU - Coats, Louise

AU - Crossland, David Steven

AU - Mumford, Lisa

AU - Hakmi, Samer

AU - Sivathasan, Cumaraswamy

AU - Fabritz, Larissa

AU - Schubert, Stephan

AU - Gummert, Jan

AU - Hübler, Michael

AU - Jacksch, Peter

AU - Zuckermann, Andreas

AU - Laufer, Günther

AU - Baumgartner, Helmut

AU - Giamberti, Alessandro

AU - Reichenspurner, Hermann

AU - Kirchhof, Paulus

N1 - © 2021 The Authors. ESC Heart Failure published by John Wiley & Sons Ltd on behalf of European Society of Cardiology.

PY - 2021/12

Y1 - 2021/12

N2 - AIM: Due to improved therapy in childhood, many patients with congenital heart disease reach adulthood and are termed adults with congenital heart disease (ACHD). ACHD often develop heart failure (HF) as a consequence of initial palliative surgery or complex anatomy and subsequently require advanced HF therapy. ACHD are usually excluded from trials evaluating heart failure therapies, and in this context, more data about heart failure trajectories in ACHD are needed to guide the management of ACHD suffering from HF.METHODS AND RESULTS: The pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R) will collect data from ACHD evaluated or listed for heart or heart-combined organ transplantation from 16 countries in Europe and the Asia/Pacific region. We plan retrospective collection of data from 1989-2020 and will include patients prospectively. Additional organizations and hospitals in charge of transplantation of ACHD will be asked in the future to contribute data to the register. The primary outcome is the combined endpoint of delisting due to clinical worsening or death on the waiting list. The secondary outcome is delisting due to clinical improvement while on the waiting list. All-cause mortality following transplantation will also be assessed. The data will be entered into an electronic database with access to the investigators participating in the register. All variables of the register reflect key components important for listing of the patients or assessing current HF treatment.CONCLUSION: The ARTORIA-R will provide robust information on current management and outcomes of adults with congenital heart disease suffering from advanced heart failure.

AB - AIM: Due to improved therapy in childhood, many patients with congenital heart disease reach adulthood and are termed adults with congenital heart disease (ACHD). ACHD often develop heart failure (HF) as a consequence of initial palliative surgery or complex anatomy and subsequently require advanced HF therapy. ACHD are usually excluded from trials evaluating heart failure therapies, and in this context, more data about heart failure trajectories in ACHD are needed to guide the management of ACHD suffering from HF.METHODS AND RESULTS: The pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R) will collect data from ACHD evaluated or listed for heart or heart-combined organ transplantation from 16 countries in Europe and the Asia/Pacific region. We plan retrospective collection of data from 1989-2020 and will include patients prospectively. Additional organizations and hospitals in charge of transplantation of ACHD will be asked in the future to contribute data to the register. The primary outcome is the combined endpoint of delisting due to clinical worsening or death on the waiting list. The secondary outcome is delisting due to clinical improvement while on the waiting list. All-cause mortality following transplantation will also be assessed. The data will be entered into an electronic database with access to the investigators participating in the register. All variables of the register reflect key components important for listing of the patients or assessing current HF treatment.CONCLUSION: The ARTORIA-R will provide robust information on current management and outcomes of adults with congenital heart disease suffering from advanced heart failure.

U2 - 10.1002/ehf2.13574

DO - 10.1002/ehf2.13574

M3 - SCORING: Journal article

C2 - 34510806

VL - 8

SP - 5542

EP - 5550

JO - ESC HEART FAIL

JF - ESC HEART FAIL

SN - 2055-5822

IS - 6

ER -