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French consensus statement on transition of adolescent and young adults with rare pulmonary disease from paediatric to adult care: a Delphi method study.

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Title: French consensus statement on transition of adolescent and young adults with rare pulmonary disease from paediatric to adult care: a Delphi method study.
Authors: Peulier-Maitre E; Paediatric Pulmonology Department, Reference Center for Rare Lung Diseases RespiRare, Armand Trousseau Hospital, Assistance Publique-Hôpitaux de Paris (APHP), Sorbonne Université, Paris, France.; Sorbonne Université, Centre de Recherche Saint-Antoine (CRSA), Inserm UMR_S938, Paris, France., Goutaki M; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.; Paediatric Respiratory Medicine, Children's University Hospital of Bern, University of Bern, Switzerland., Nathan N; Paediatric Pulmonology Department, Reference Center for Rare Lung Diseases RespiRare, Armand Trousseau Hospital, Assistance Publique-Hôpitaux de Paris (APHP), Sorbonne Université, Paris, France.; Laboratory of Childhood Genetic Diseases, Inserm UMR_S933, Armand Trousseau Hospital, Sorbonne University, Paris, France., Patout M; AP-HP, Groupe Hospitalier Universitaire APHP-Sorbonne Université, site Pitié-Salpêtrière, Service des Pathologies du Sommeil (Département R3S), Paris, France.; Sorbonne Université, INSERM, UMRS1158 Neurophysiologie Respiratoire Expérimentale et Clinique, Paris, France.; AP-HP, Groupe Hospitalier Universitaire APHP-Sorbonne Université, site Pitié-Salpêtrière, Centre de Référence Constitutif Maladies Pulmonaires Rares de l'Adulte Orphalung, Hypoventilations Centrales, Syndrome d'Ondine, Paris, France., Amedro P; Department of Fetal, Pediatric and Adult Congenital Cardiology, M3C National CHD Reference Centre, Bordeaux University Hospital, Haut-Leveque Hospital, Bordeaux, France.; IHU Liryc, INSERM 1045, University of Bordeaux, Bordeaux, France., Beltramo G; Constitutive Reference Center for Rare Pulmonary Diseases, OrphaLung, Department of Pulmonary Medicine and Intensive Care Unit, Dijon-Bourgogne Universitary Hospital, Dijon, France.; Inserm UMR 1231, University of Burgundy, Dijon, France., Blonde A; Service de Médecine Infantile et CRCM Pédiatrique, Hôpital d'Enfants, CHRU de Nancy, Vandœuvre-les-Nancy, France., Bonnet D; Centre de Référence Malformations Cardiaques Congénitales Complexes-M3C, Hôpital Universitaire Necker-Enfants Malades, APHP, Paris, France.; Université Paris Cité, Paris, France., Borie R; Université de Paris, INSERM UMR 1152, Service de Pneumologie A, Centre de Compétences Maladies Pulmonaires Rares, Hôpital Bichat-Claude Bernard, AP-HP, Paris, France., Bruneaux C; Centre de Ressources et de Compétence de la Mucoviscidose Pédiatrique, CHU Bordeaux, France., Carlier-Gonod A; Pediatrics Department, Centre Hospitalier Intercommunal de Créteil (CHIC), Créteil, France., Coatrieux V; Centre de Ressources et de Compétence de la Mucoviscidose Mixte, CHIC, Créteil, France., Cros P; Department of Pediatric, CHU Brest, Brest, France., Douvry B; Université Paris Est-Créteil, Faculté de Santé, INSERM, IMRB, Créteil, France.; Pulmonary Department, Hôpital Intercommunal de Créteil, Créteil, France., Dubus JC; Service de Pneumologie Pédiatrique, CHU Timone enfants, Assistante Publique des Hôpitaux de Marseille, Marseille, France.; Aix-Marseille Université, INSERM 1263, INRAE1260, C2VN Marseille, France., Dufeu N; Department of Respiratory Medicine and Lung Transplantation, Aix Marseille Univ, APHM, Hôpital Nord, Marseille, France., Dulac Y; Pediatric Cardiology, Hôpital des enfants, CHU de Toulouse, Toulouse, France., Ferry M; Sorbonne Université, Department of General practice, Paris, France., Girardon D; Agastya, M.A.Form, Montlignon, France., Gonsseaume S; Centre de Ressources et de Compétences de la Mucoviscidose Pédiatrique, CHU Robert Debré, Paris, France., Grange AC; Filière de Santé Nationale Maladies Rares CARDIOGEN, Bordeaux, France., Hameury F; Department of Pediatric Surgery, Hôpital Femme Mère-Enfant, Hospices Civils de Lyon, Bron, France., Jaffre S; Nantes Université, CHU Nantes, Department of Respiratory Medicine, l'Institut du Thorax, Nantes, France., Ladouceur M; Department of Cardiology, Hôpitaux Universitaires de Genève, Geneva, Switzerland.; Centre de Recherche Cardiovasculaire de Paris, INSERM U970, Paris, France.; Peadiatric and Congenital Cardiac Surgery Department, Marie-Lannelongue Hospital, Centre de Référence des Malformations Cardiaques Congénitales Complexes M3C Groupe Hospitalier Saint-Joseph, Paris-Saclay University, Le Plessis Robinson, France., Llerena C; Centre de Ressources et de Compétences de la Mucoviscidose, Département de Pédiatrie, CHU de Grenoble, Grenoble, France., Madaoui F; Espace de Soins et de Coordination de l'Adolescent et de son Entourage ESCALE, Hôpital Armand Trousseau, APHP, Paris, France., Manali E; Pulmonary Medicine Department, General University Hospital 'Attikon', Medical School, National and Kapodistrian University of Athens, Athens, Greece., Mellerio H; Université de Paris, ECEVE UMR 1123, Inserm, Paris, France.; Groupe de Recherche en Médecine et Santé de l'Adolescent, Paris, France.; Plateforme de Transition 'Ad'venir', Service de Médecine d'Adolescent, Hôpital Robert Debré, APHP, Paris, France., Mittaine M; CRCM Pédiatrique, Service de Pneumo-Allergologie Pédiatrique, Hôpital des Enfants, Centre Hospitalier Universitaire de Toulouse, Toulouse, France., Morsa M; Adaptation, Resilience and Change Research Unit, University of Liège, Liège, Belgium., Papon JF; APHP, Université Paris-Saclay, Hôpital Bicêtre, Service d'ORL, Le Kremlin-Bicêtre, France.; Faculté de Médecine, Université Paris-Saclay, Le Kremlin-Bicêtre, France., Schwartz E; Pediatric Neurology Department, Reference Centre for Neuromuscular Diseases, Armand Trousseau Hospital, APHP, Paris, France., Sitbon O; Faculté de Médecine, Université Paris-Saclay, Le Kremlin-Bicêtre, France.; APHP, Department of Respiratory and Intensive Care Medicine, Hôpital Bicêtre, Le Kremlin-Bicêtre, France., Szezepanski I; Centre de Référence Malformations Cardiaques Congénitales Complexes-M3C, Hôpital Universitaire Necker-Enfants Malades, APHP, Paris, France., Tessier M; Service des Maladies Héréditaires du Métabolisme, Hôpital Necker Enfants Malades, APHP, Paris, France., Werck-Gallois MC; Service de Pneumologie, Allergologie, Mucoviscidose, Centre de Compétences Pour Les Maladies Respiratoires Rares de L'enfant, Hôpital Femme Mère Enfant, Hospices Civils de Lyon, Lyon, France., Zemouri M; Paediatric Pulmonology Department, Reference Center for Rare Lung Diseases RespiRare, Armand Trousseau Hospital, Assistance Publique-Hôpitaux de Paris (APHP), Sorbonne Université, Paris, France., Hascoet S; Peadiatric and Congenital Cardiac Surgery Department, Marie-Lannelongue Hospital, Centre de Référence des Malformations Cardiaques Congénitales Complexes M3C Groupe Hospitalier Saint-Joseph, Paris-Saclay University, Le Plessis Robinson, France.; UMRS 999, INSERM, Marie-Lannelongue Hospital, Paris-Saclay University, Le Plessis Robinson, France., Remus N; Centre de Ressources et de Compétence de la Mucoviscidose Mixte, CHIC, Créteil, France., Thouvenin G; Paediatric Pulmonology Department, Reference Center for Rare Lung Diseases RespiRare, Armand Trousseau Hospital, Assistance Publique-Hôpitaux de Paris (APHP), Sorbonne Université, Paris, France.; Sorbonne Université, Centre de Recherche Saint-Antoine (CRSA), Inserm UMR_S938, Paris, France.; Espace de Soins et de Coordination de l'Adolescent et de son Entourage ESCALE, Hôpital Armand Trousseau, APHP, Paris, France.
Source: ERJ open research [ERJ Open Res] 2025 Dec 01; Vol. 11 (6). Date of Electronic Publication: 2025 Dec 01 (Print Publication: 2025).
Publication Type: Journal Article
Journal Info: Publisher: European Respiratory Society Country of Publication: England NLM ID: 101671641 Publication Model: eCollection Cited Medium: Print ISSN: 2312-0541 (Print) Linking ISSN: 23120541 NLM ISO Abbreviation: ERJ Open Res Subsets: PubMed not MEDLINE
Database: MEDLINE Ultimate
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  Data: French consensus statement on transition of adolescent and young adults with rare pulmonary disease from paediatric to adult care: a Delphi method study.
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  Data: <searchLink fieldCode="AU" term="%22Peulier-Maitre+E%22">Peulier-Maitre E</searchLink>; Paediatric Pulmonology Department, Reference Center for Rare Lung Diseases RespiRare, Armand Trousseau Hospital, Assistance Publique-Hôpitaux de Paris (APHP), Sorbonne Université, Paris, France.; Sorbonne Université, Centre de Recherche Saint-Antoine (CRSA), Inserm UMR_S938, Paris, France.<br /><searchLink fieldCode="AU" term="%22Goutaki+M%22">Goutaki M</searchLink>; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.; Paediatric Respiratory Medicine, Children's University Hospital of Bern, University of Bern, Switzerland.<br /><searchLink fieldCode="AU" term="%22Nathan+N%22">Nathan N</searchLink>; Paediatric Pulmonology Department, Reference Center for Rare Lung Diseases RespiRare, Armand Trousseau Hospital, Assistance Publique-Hôpitaux de Paris (APHP), Sorbonne Université, Paris, France.; Laboratory of Childhood Genetic Diseases, Inserm UMR_S933, Armand Trousseau Hospital, Sorbonne University, Paris, France.<br /><searchLink fieldCode="AU" term="%22Patout+M%22">Patout M</searchLink>; AP-HP, Groupe Hospitalier Universitaire APHP-Sorbonne Université, site Pitié-Salpêtrière, Service des Pathologies du Sommeil (Département R3S), Paris, France.; Sorbonne Université, INSERM, UMRS1158 Neurophysiologie Respiratoire Expérimentale et Clinique, Paris, France.; AP-HP, Groupe Hospitalier Universitaire APHP-Sorbonne Université, site Pitié-Salpêtrière, Centre de Référence Constitutif Maladies Pulmonaires Rares de l'Adulte Orphalung, Hypoventilations Centrales, Syndrome d'Ondine, Paris, France.<br /><searchLink fieldCode="AU" term="%22Amedro+P%22">Amedro P</searchLink>; Department of Fetal, Pediatric and Adult Congenital Cardiology, M3C National CHD Reference Centre, Bordeaux University Hospital, Haut-Leveque Hospital, Bordeaux, France.; IHU Liryc, INSERM 1045, University of Bordeaux, Bordeaux, France.<br /><searchLink fieldCode="AU" term="%22Beltramo+G%22">Beltramo G</searchLink>; Constitutive Reference Center for Rare Pulmonary Diseases, OrphaLung, Department of Pulmonary Medicine and Intensive Care Unit, Dijon-Bourgogne Universitary Hospital, Dijon, France.; Inserm UMR 1231, University of Burgundy, Dijon, France.<br /><searchLink fieldCode="AU" term="%22Blonde+A%22">Blonde A</searchLink>; Service de Médecine Infantile et CRCM Pédiatrique, Hôpital d'Enfants, CHRU de Nancy, Vandœuvre-les-Nancy, France.<br /><searchLink fieldCode="AU" term="%22Bonnet+D%22">Bonnet D</searchLink>; Centre de Référence Malformations Cardiaques Congénitales Complexes-M3C, Hôpital Universitaire Necker-Enfants Malades, APHP, Paris, France.; Université Paris Cité, Paris, France.<br /><searchLink fieldCode="AU" term="%22Borie+R%22">Borie R</searchLink>; Université de Paris, INSERM UMR 1152, Service de Pneumologie A, Centre de Compétences Maladies Pulmonaires Rares, Hôpital Bichat-Claude Bernard, AP-HP, Paris, France.<br /><searchLink fieldCode="AU" term="%22Bruneaux+C%22">Bruneaux C</searchLink>; Centre de Ressources et de Compétence de la Mucoviscidose Pédiatrique, CHU Bordeaux, France.<br /><searchLink fieldCode="AU" term="%22Carlier-Gonod+A%22">Carlier-Gonod A</searchLink>; Pediatrics Department, Centre Hospitalier Intercommunal de Créteil (CHIC), Créteil, France.<br /><searchLink fieldCode="AU" term="%22Coatrieux+V%22">Coatrieux V</searchLink>; Centre de Ressources et de Compétence de la Mucoviscidose Mixte, CHIC, Créteil, France.<br /><searchLink fieldCode="AU" term="%22Cros+P%22">Cros P</searchLink>; Department of Pediatric, CHU Brest, Brest, France.<br /><searchLink fieldCode="AU" term="%22Douvry+B%22">Douvry B</searchLink>; Université Paris Est-Créteil, Faculté de Santé, INSERM, IMRB, Créteil, France.; Pulmonary Department, Hôpital Intercommunal de Créteil, Créteil, France.<br /><searchLink fieldCode="AU" term="%22Dubus+JC%22">Dubus JC</searchLink>; Service de Pneumologie Pédiatrique, CHU Timone enfants, Assistante Publique des Hôpitaux de Marseille, Marseille, France.; Aix-Marseille Université, INSERM 1263, INRAE1260, C2VN Marseille, France.<br /><searchLink fieldCode="AU" term="%22Dufeu+N%22">Dufeu N</searchLink>; Department of Respiratory Medicine and Lung Transplantation, Aix Marseille Univ, APHM, Hôpital Nord, Marseille, France.<br /><searchLink fieldCode="AU" term="%22Dulac+Y%22">Dulac Y</searchLink>; Pediatric Cardiology, Hôpital des enfants, CHU de Toulouse, Toulouse, France.<br /><searchLink fieldCode="AU" term="%22Ferry+M%22">Ferry M</searchLink>; Sorbonne Université, Department of General practice, Paris, France.<br /><searchLink fieldCode="AU" term="%22Girardon+D%22">Girardon D</searchLink>; Agastya, M.A.Form, Montlignon, France.<br /><searchLink fieldCode="AU" term="%22Gonsseaume+S%22">Gonsseaume S</searchLink>; Centre de Ressources et de Compétences de la Mucoviscidose Pédiatrique, CHU Robert Debré, Paris, France.<br /><searchLink fieldCode="AU" term="%22Grange+AC%22">Grange AC</searchLink>; Filière de Santé Nationale Maladies Rares CARDIOGEN, Bordeaux, France.<br /><searchLink fieldCode="AU" term="%22Hameury+F%22">Hameury F</searchLink>; Department of Pediatric Surgery, Hôpital Femme Mère-Enfant, Hospices Civils de Lyon, Bron, France.<br /><searchLink fieldCode="AU" term="%22Jaffre+S%22">Jaffre S</searchLink>; Nantes Université, CHU Nantes, Department of Respiratory Medicine, l'Institut du Thorax, Nantes, France.<br /><searchLink fieldCode="AU" term="%22Ladouceur+M%22">Ladouceur M</searchLink>; Department of Cardiology, Hôpitaux Universitaires de Genève, Geneva, Switzerland.; Centre de Recherche Cardiovasculaire de Paris, INSERM U970, Paris, France.; Peadiatric and Congenital Cardiac Surgery Department, Marie-Lannelongue Hospital, Centre de Référence des Malformations Cardiaques Congénitales Complexes M3C Groupe Hospitalier Saint-Joseph, Paris-Saclay University, Le Plessis Robinson, France.<br /><searchLink fieldCode="AU" term="%22Llerena+C%22">Llerena C</searchLink>; Centre de Ressources et de Compétences de la Mucoviscidose, Département de Pédiatrie, CHU de Grenoble, Grenoble, France.<br /><searchLink fieldCode="AU" term="%22Madaoui+F%22">Madaoui F</searchLink>; Espace de Soins et de Coordination de l'Adolescent et de son Entourage ESCALE, Hôpital Armand Trousseau, APHP, Paris, France.<br /><searchLink fieldCode="AU" term="%22Manali+E%22">Manali E</searchLink>; Pulmonary Medicine Department, General University Hospital 'Attikon', Medical School, National and Kapodistrian University of Athens, Athens, Greece.<br /><searchLink fieldCode="AU" term="%22Mellerio+H%22">Mellerio H</searchLink>; Université de Paris, ECEVE UMR 1123, Inserm, Paris, France.; Groupe de Recherche en Médecine et Santé de l'Adolescent, Paris, France.; Plateforme de Transition 'Ad'venir', Service de Médecine d'Adolescent, Hôpital Robert Debré, APHP, Paris, France.<br /><searchLink fieldCode="AU" term="%22Mittaine+M%22">Mittaine M</searchLink>; CRCM Pédiatrique, Service de Pneumo-Allergologie Pédiatrique, Hôpital des Enfants, Centre Hospitalier Universitaire de Toulouse, Toulouse, France.<br /><searchLink fieldCode="AU" term="%22Morsa+M%22">Morsa M</searchLink>; Adaptation, Resilience and Change Research Unit, University of Liège, Liège, Belgium.<br /><searchLink fieldCode="AU" term="%22Papon+JF%22">Papon JF</searchLink>; APHP, Université Paris-Saclay, Hôpital Bicêtre, Service d'ORL, Le Kremlin-Bicêtre, France.; Faculté de Médecine, Université Paris-Saclay, Le Kremlin-Bicêtre, France.<br /><searchLink fieldCode="AU" term="%22Schwartz+E%22">Schwartz E</searchLink>; Pediatric Neurology Department, Reference Centre for Neuromuscular Diseases, Armand Trousseau Hospital, APHP, Paris, France.<br /><searchLink fieldCode="AU" term="%22Sitbon+O%22">Sitbon O</searchLink>; Faculté de Médecine, Université Paris-Saclay, Le Kremlin-Bicêtre, France.; APHP, Department of Respiratory and Intensive Care Medicine, Hôpital Bicêtre, Le Kremlin-Bicêtre, France.<br /><searchLink fieldCode="AU" term="%22Szezepanski+I%22">Szezepanski I</searchLink>; Centre de Référence Malformations Cardiaques Congénitales Complexes-M3C, Hôpital Universitaire Necker-Enfants Malades, APHP, Paris, France.<br /><searchLink fieldCode="AU" term="%22Tessier+M%22">Tessier M</searchLink>; Service des Maladies Héréditaires du Métabolisme, Hôpital Necker Enfants Malades, APHP, Paris, France.<br /><searchLink fieldCode="AU" term="%22Werck-Gallois+MC%22">Werck-Gallois MC</searchLink>; Service de Pneumologie, Allergologie, Mucoviscidose, Centre de Compétences Pour Les Maladies Respiratoires Rares de L'enfant, Hôpital Femme Mère Enfant, Hospices Civils de Lyon, Lyon, France.<br /><searchLink fieldCode="AU" term="%22Zemouri+M%22">Zemouri M</searchLink>; Paediatric Pulmonology Department, Reference Center for Rare Lung Diseases RespiRare, Armand Trousseau Hospital, Assistance Publique-Hôpitaux de Paris (APHP), Sorbonne Université, Paris, France.<br /><searchLink fieldCode="AU" term="%22Hascoet+S%22">Hascoet S</searchLink>; Peadiatric and Congenital Cardiac Surgery Department, Marie-Lannelongue Hospital, Centre de Référence des Malformations Cardiaques Congénitales Complexes M3C Groupe Hospitalier Saint-Joseph, Paris-Saclay University, Le Plessis Robinson, France.; UMRS 999, INSERM, Marie-Lannelongue Hospital, Paris-Saclay University, Le Plessis Robinson, France.<br /><searchLink fieldCode="AU" term="%22Remus+N%22">Remus N</searchLink>; Centre de Ressources et de Compétence de la Mucoviscidose Mixte, CHIC, Créteil, France.<br /><searchLink fieldCode="AU" term="%22Thouvenin+G%22">Thouvenin G</searchLink>; Paediatric Pulmonology Department, Reference Center for Rare Lung Diseases RespiRare, Armand Trousseau Hospital, Assistance Publique-Hôpitaux de Paris (APHP), Sorbonne Université, Paris, France.; Sorbonne Université, Centre de Recherche Saint-Antoine (CRSA), Inserm UMR_S938, Paris, France.; Espace de Soins et de Coordination de l'Adolescent et de son Entourage ESCALE, Hôpital Armand Trousseau, APHP, Paris, France.
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  Data: <searchLink fieldCode="JN" term="%22101671641%22">ERJ open research</searchLink> [ERJ Open Res] 2025 Dec 01; Vol. 11 (6). <i>Date of Electronic Publication: </i>2025 Dec 01 (<i>Print Publication: </i>2025).
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            NameFull: Hascoet S
      – PersonEntity:
          Name:
            NameFull: Remus N
      – PersonEntity:
          Name:
            NameFull: Thouvenin G
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 12
              Text: 2025 Dec 01
              Type: published
              Y: 2025
          Identifiers:
            – Type: issn-print
              Value: 2312-0541
          Numbering:
            – Type: volume
              Value: 11
            – Type: issue
              Value: 6
          Titles:
            – TitleFull: ERJ open research
              Type: main
ResultId 1