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, Maria-Ángeles; Petit, Thibault; Chen, Yih‐Sharng; Rito, Mauro Lo; Chiarello, Carmelina; Guillemain, R.; Coniat, K. Nubret-Le; Magnussen, Christina; Knappe, Dorit; Becher, Peter Moritz; Schrage, Benedikt; Smits, Jacqueline M.; Metzner, Andreas; Knosalla, Christoph; Schoenrath, Felix; Miera, Oliver; Cho, Young Min; Bernhardt, A.; 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; Pauw, Michel De; François, Katrien; Caenegem, Olivier Van; Ancion, A; Cleemput, Johan Van; Miličić, Davor; Moza, Ajay; Schenker, Peter; Thul, Josef; Steinmetz, Michael; Warnecke, G.; Ius, F.; Freyt, Susanne; Avşar, M.; Sandhaus, T.; Haneya, Assad; Eifert, Sandra; Saeed, Diyar; Borger, Michael A.; Welp, Henryk; Ablonczy, László; Schmack, Bastian; Ruhparwar, Arjang; Naito, Shokichi; Hua, Xiaoqin; Fluschnik, Nina; Nies, Moritz; Keil, Laura; Senftinger, Juliana; Ismaili, Djemail; Kany, Shinwan; Csengeri, Dora; Cardillo, Massimo; Oliveti, A.; Faggian, Giuseppe; Dorent, Richard; Jasseron, Carine; Blanco, Alicia Pérez; Marquez, José; López‐Vilella, Raquel; García‐Álvarez, Ana; López, M. Luz Polo; Rocafort, Álvaro González; Fernández, Óscar González; Prieto-Arévalo, Raquel; Zataraín-Nicolás, Eduardo; Blanchart, Katrien; Boignard, Aude; Battistella, Pascal; Guendouz, Soulef; Houyel, Lucile; Para, Marylou; Flécher, Erwan; Epailly, Éric; Dambrin, Camille; Lam, Kaitlyn; Ka-Lai, Cally Ho; Cho, Yang Hyun; Choi, Jin-Oh; Kim, Jae‐Joong; Coats, Louise; Crossland, David; 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

doi:10.1002/ehf2.13574

Cited by 4 publications

(2 citation statements)

References 30 publications

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“…An international registry collecting data from patients with CHD evaluated or listed for HT or heart-combined organ transplantation from 16 countries, ARTORIA-R (Patients Presenting With Congenital Heart Disease Register), is being set up to provide robust information on outcomes of adults with CHD and advanced HF. 24 This initiative may provide better survival models for patients with CHD and advanced HF. Our study also found similar outcomes on the waitlist for candidates with HCM or RCM and common causes of HF but identified RCM as an independent risk factor for 1-year posttransplant mortality (HR, 2.12 [95% CI, 1.06-4.24]; P=0.03).…”

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Waitlist Outcomes in Candidates With Rare Causes of Heart Failure After Implementation of the 2018 French Heart Allocation Scheme

Legeai,

Coutance,

Cantrelle

et al. 2024

Circ: Heart Failure

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BACKGROUND: In 2018, an algorithm-based allocation system for heart transplantation (HT) was implemented in France. Its effect on access to HT of patients with rare causes of heart failure (HF) has not been assessed. METHODS: In this national study, including adults listed for HT between 2018 and 2020, we analyzed waitlist and posttransplant outcomes of candidates with rare causes of HF (restrictive cardiomyopathy [RCM], hypertrophic cardiomyopathy, and congenital heart disease). The primary end point was death on the waitlist or delisting for clinical deterioration. Secondary end points included access to HT and posttransplant mortality. The cumulative incidence of waitlist mortality estimated with competing risk analysis and incidence of transplantation were compared between diagnosis groups. The association of HF cause with outcomes was determined by Fine-Gray or Cox models. RESULTS: Overall, 1604 candidates were listed for HT. At 1 year postlisting, 175 patients met the primary end point and 1040 underwent HT. Candidates listed for rare causes of HF significantly differed in baseline characteristics and had more frequent score exceptions compared with other cardiomyopathies (31.3%, 32.0%, 36.4%, and 16.7% for patients with hypertrophic cardiomyopathy, RCM, congenital heart disease, and other cardiomyopathies). The cumulative incidence of death on the waitlist and probability of HT were similar between diagnosis groups ( P =0.17 and 0.40, respectively). The adjusted risk of death or delisting for clinical deterioration did not significantly differ between candidates with rare and common causes of HF (subdistribution hazard ratio (HR): hypertrophic cardiomyopathy, 0.51 [95% CI, 0.19–1.38]; P =0.18; RCM, 1.04 [95% CI, 0.42–2.58]; P =0.94; congenital heart disease, 1.82 [95% CI, 0.78–4.26]; P =0.17). Similarly, the access to HT did not significantly differ between causes of HF (hypertrophic cardiomyopathy: HR, 1.18 [95% CI, 0.92–1.51]; P =0.19; RCM: HR, 1.19 [95% CI, 0.90–1.58]; P =0.23; congenital heart disease: HR, 0.76 [95% CI, 0.53–1.09]; P =0.14). RCM was an independent risk factor for 1-year posttransplant mortality (HR, 2.12 [95% CI, 1.06–4.24]; P =0.03). CONCLUSIONS: Our study shows equitable waitlist outcomes among HT candidates whatever the indication for transplantation with the new French allocation scheme.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Waitlist Outcomes in Candidates With Rare Causes of Heart Failure After Implementation of the 2018 French Heart Allocation Scheme

Legeai,

Coutance,

Cantrelle

et al. 2024

Circ: Heart Failure

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

Sinning¹,

Zengin²,

Diller³

et al. 2021

ESC Heart Failure

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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 resultsThe 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. ConclusionThe ARTORIA-R will provide robust information on current management and outcomes of adults with congenital heart disease suffering from advanced heart failure.

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Cardiopatías congénitas, ¿cómo prepararnos para el trasplante?: Aspectos quirúrgicos

López¹,

Rocafort²,

Ramchandani³

et al. 2022

Cirugía Cardiovascular

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

Cited by 4 publications

References 30 publications

Waitlist Outcomes in Candidates With Rare Causes of Heart Failure After Implementation of the 2018 French Heart Allocation Scheme

Waitlist Outcomes in Candidates With Rare Causes of Heart Failure After Implementation of the 2018 French Heart Allocation Scheme

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

Cardiopatías congénitas, ¿cómo prepararnos para el trasplante?: Aspectos quirúrgicos

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