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

Title: Study design and rationale of the pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R)
Authors: Sinning C; Zengin E; Diller GP; Onorati F; Castel MA; Petit T; Chen YS; Lo Rito M; Chiarello C; Guillemain R; Coniat KN; Magnussen C; Knappe D; Becher PM; Schrage B; Smits JM; Metzner A; Knosalla C; Schoenrath F; Miera O; Cho MY; Bernhardt A; 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 JO; Kim JJ; Coats L; Crossland DS; Mumford L; Hakmi S; Sivathasan C; Fabritz L; Schubert S; Gummert J; Hübler M; Jacksch P; Zuckermann A; Laufer G
Contributors: Sinning, C; Zengin, E; Diller, Gp; Onorati, F; Castel, Ma; Petit, T; Chen, Y; Lo Rito, M; Chiarello, C; Guillemain, R; Coniat, Kn; Magnussen, C; Knappe, D; Becher, Pm; Schrage, B; Smits, Jm; Metzner, A; Knosalla, C; Schoenrath, F; Miera, O; Cho, My; Bernhardt, A; 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, Jm; 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, Jo; Kim, Jj; Coats, L; Crossland, D; Mumford, L; Hakmi, S; Sivathasan, C
Publisher Information: WILEY PERIODICALS, INC
Publication Year: 2021
Collection: Padua Research Archive (IRIS - Università degli Studi di Padova)
Description: 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 r.
Document Type: article in journal/newspaper
Language: English
Relation: info:eu-repo/semantics/altIdentifier/pmid/34510806; info:eu-repo/semantics/altIdentifier/wos/WOS:000695059000001; volume:8; issue:6; firstpage:5542; lastpage:5550; journal:ESC HEART FAILURE; https://hdl.handle.net/11577/3538212
DOI: 10.1002/ehf2.13574
Availability: https://hdl.handle.net/11577/3538212; https://doi.org/10.1002/ehf2.13574
Rights: info:eu-repo/semantics/openAccess ; license:Creative commons ; license uri:http://creativecommons.org/licenses/by-nc/4.0/
Accession Number: edsbas.255BFE30
Database: BASE