PATHFINDER-CHD: prospective registry on adults with congenital heart disease, abnormal ventricular function, and/or heart failure as a foundation for establishing rehabilitative, prehabilitative, preventive, and health-promoting measures: rationale, aims, design and methods
Abstract Background Adults with congenital heart defects (ACHD) globally constitute a notably medically underserved patient population. Despite therapeutic advancements, these individuals often confront substantial physical and psychosocial residua or sequelae, requiring specialized, integrative car...
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| Format: | Article |
| Language: | English |
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BMC
2024-03-01
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| Series: | BMC Cardiovascular Disorders |
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| Online Access: | https://doi.org/10.1186/s12872-024-03833-y |
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| author | Sebastian Freilinger Harald Kaemmerer Robert D. Pittrow Stefan Achenbach Stefan Baldus Oliver Dewald Peter Ewert Annika Freiberger Matthias Gorenflo Frank Harig Christopher Hohmann Stefan Holdenrieder Jürgen Hörer Michael Huntgeburth Michael Hübler Niko Kohls Frank Klawonn Rainer Kozlik-Feldmann Renate Kaulitz Dirk Loßnitzer Friedrich Mellert Nicole Nagdyman Johannes Nordmeyer Benjamin A. Pittrow Leonard B. Pittrow Carsten Rickers Stefan Rosenkranz Jörg Schelling Christoph Sinning Mathieu N. Suleiman Yskert von Kodolitsch Fabian von Scheidt Ann-Sophie Kaemmerer-Suleiman |
| author_facet | Sebastian Freilinger Harald Kaemmerer Robert D. Pittrow Stefan Achenbach Stefan Baldus Oliver Dewald Peter Ewert Annika Freiberger Matthias Gorenflo Frank Harig Christopher Hohmann Stefan Holdenrieder Jürgen Hörer Michael Huntgeburth Michael Hübler Niko Kohls Frank Klawonn Rainer Kozlik-Feldmann Renate Kaulitz Dirk Loßnitzer Friedrich Mellert Nicole Nagdyman Johannes Nordmeyer Benjamin A. Pittrow Leonard B. Pittrow Carsten Rickers Stefan Rosenkranz Jörg Schelling Christoph Sinning Mathieu N. Suleiman Yskert von Kodolitsch Fabian von Scheidt Ann-Sophie Kaemmerer-Suleiman |
| author_sort | Sebastian Freilinger |
| collection | DOAJ |
| description | Abstract Background Adults with congenital heart defects (ACHD) globally constitute a notably medically underserved patient population. Despite therapeutic advancements, these individuals often confront substantial physical and psychosocial residua or sequelae, requiring specialized, integrative cardiological care throughout their lifespan. Heart failure (HF) is a critical challenge in this population, markedly impacting morbidity and mortality. Aims The primary aim of this study is to establish a comprehensive, prospective registry to enhance understanding and management of HF in ACHD. Named PATHFINDER-CHD, this registry aims to establish foundational data for treatment strategies as well as the development of rehabilitative, prehabilitative, preventive, and health-promoting interventions, ultimately aiming to mitigate the elevated morbidity and mortality rates associated with congenital heart defects (CHD). Methods This multicenter survey will be conducted across various German university facilities with expertise in ACHD. Data collection will encompass real-world treatment scenarios and clinical trajectories in ACHD with manifest HF or at risk for its development, including those undergoing medical or interventional cardiac therapies, cardiac surgery, inclusive of pacemaker or ICD implantation, resynchronization therapy, assist devices, and those on solid organ transplantation. Design The study adopts an observational, exploratory design, prospectively gathering data from participating centers, with a focus on patient management and outcomes. The study is non-confirmatory, aiming to accumulate a broad spectrum of data to inform future hypotheses and studies. Processes Regular follow-ups will be conducted, systematically collecting data during routine clinical visits or hospital admissions, encompassing alterations in therapy or CHD-related complications, with visit schedules tailored to individual clinical needs. Assessments Baseline assessments and regular follow-ups will entail comprehensive assessments of medical history, ongoing treatments, and outcomes, with a focus on HF symptoms, cardiac function, and overall health status. Discussion of the design The design of the PATHFINDER-CHD Registry is tailored to capture a wide range of data, prioritizing real-world HF management in ACHD. Its prospective nature facilitates longitudinal data acquisition, pivotal for comprehending for disease progression and treatment impacts. Conclusion The PATHFINDER-CHD Registry is poised to offer valuable insights into HF management in ACHD, bridging current knowledge gaps, enhancing patient care, and shaping future research endeavors in this domain. |
| first_indexed | 2024-04-24T16:22:09Z |
| format | Article |
| id | doaj.art-346286362cfc428283d78dfbbeca975b |
| institution | Directory Open Access Journal |
| issn | 1471-2261 |
| language | English |
| last_indexed | 2024-04-24T16:22:09Z |
| publishDate | 2024-03-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Cardiovascular Disorders |
| spelling | doaj.art-346286362cfc428283d78dfbbeca975b2024-03-31T11:10:11ZengBMCBMC Cardiovascular Disorders1471-22612024-03-012411910.1186/s12872-024-03833-yPATHFINDER-CHD: prospective registry on adults with congenital heart disease, abnormal ventricular function, and/or heart failure as a foundation for establishing rehabilitative, prehabilitative, preventive, and health-promoting measures: rationale, aims, design and methodsSebastian Freilinger0Harald Kaemmerer1Robert D. Pittrow2Stefan Achenbach3Stefan Baldus4Oliver Dewald5Peter Ewert6Annika Freiberger7Matthias Gorenflo8Frank Harig9Christopher Hohmann10Stefan Holdenrieder11Jürgen Hörer12Michael Huntgeburth13Michael Hübler14Niko Kohls15Frank Klawonn16Rainer Kozlik-Feldmann17Renate Kaulitz18Dirk Loßnitzer19Friedrich Mellert20Nicole Nagdyman21Johannes Nordmeyer22Benjamin A. Pittrow23Leonard B. Pittrow24Carsten Rickers25Stefan Rosenkranz26Jörg Schelling27Christoph Sinning28Mathieu N. Suleiman29Yskert von Kodolitsch30Fabian von Scheidt31Ann-Sophie Kaemmerer-Suleiman32International Center for Adults With Congenital Heart Disease, Clinic for Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University MunichInternational Center for Adults With Congenital Heart Disease, Clinic for Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University MunichDepartment of Cardiac Surgery, University Hospital Erlangen, Friedrich-Alexander-University Erlangen-NürnbergDepartment of Cardiology, Medizinische Klinik 2 – Kardiologie und Angiologie University Hospital Erlangen, Friedrich-Alexander-University Erlangen-NürnbergClinic III for Internal Medicine, Faculty of Medicine and University Hospital Cologne, University of CologneDepartment of Cardiac Surgery, University Hospital Erlangen, Friedrich-Alexander-University Erlangen-NürnbergInternational Center for Adults With Congenital Heart Disease, Clinic for Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University MunichInternational Center for Adults With Congenital Heart Disease, Clinic for Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University MunichDepartment of Paediatric Cardiology and Congenital Heart Disease Center for Child and Adolescent Health, Medical Center—University of Heidelberg, Faculty of Medicine, University of HeidelbergDepartment of Cardiac Surgery, University Hospital Erlangen, Friedrich-Alexander-University Erlangen-NürnbergClinic III for Internal Medicine, Faculty of Medicine and University Hospital Cologne, University of CologneInstitute of Laboratory Medicine, Deutsches Herzzentrum München, Technical University MunichDepartment for Congenital and Paediatric Surgery, German Heart Center Munich, Technical University MunichInternational Center for Adults With Congenital Heart Disease, Clinic for Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University MunichUniversity Heart & Vascular CenterFaculty of Applied Natural Sciences and Health, Division of Health Promotion, University of Applied Sciences and Arts CoburgHelmholtz Centre for Infection Research, Biostatistics Research GroupUniversity Heart & Vascular CenterDepartment of Pediatric Cardiology, University Children’s Hospital, University of TübingenDepartment of Paediatric Cardiology and Congenital Heart Disease Center for Child and Adolescent Health, Medical Center—University of Heidelberg, Faculty of Medicine, University of HeidelbergDepartment of Cardiac Surgery, University Hospital Erlangen, Friedrich-Alexander-University Erlangen-NürnbergInternational Center for Adults With Congenital Heart Disease, Clinic for Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University MunichDepartment of Pediatric Cardiology, University Children’s Hospital, University of TübingenDepartment of Cardiac Surgery, University Hospital Erlangen, Friedrich-Alexander-University Erlangen-NürnbergDepartment of Cardiac Surgery, University Hospital Erlangen, Friedrich-Alexander-University Erlangen-NürnbergUniversity Heart & Vascular CenterClinic III for Internal Medicine, Faculty of Medicine and University Hospital Cologne, University of CologneGeneral Medical Practice MartinsriedUniversity Heart & Vascular CenterDepartment of Cardiac Surgery, University Hospital Erlangen, Friedrich-Alexander-University Erlangen-NürnbergUniversity Heart & Vascular CenterInternational Center for Adults With Congenital Heart Disease, Clinic for Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University MunichDepartment of Cardiac Surgery, University Hospital Erlangen, Friedrich-Alexander-University Erlangen-NürnbergAbstract Background Adults with congenital heart defects (ACHD) globally constitute a notably medically underserved patient population. Despite therapeutic advancements, these individuals often confront substantial physical and psychosocial residua or sequelae, requiring specialized, integrative cardiological care throughout their lifespan. Heart failure (HF) is a critical challenge in this population, markedly impacting morbidity and mortality. Aims The primary aim of this study is to establish a comprehensive, prospective registry to enhance understanding and management of HF in ACHD. Named PATHFINDER-CHD, this registry aims to establish foundational data for treatment strategies as well as the development of rehabilitative, prehabilitative, preventive, and health-promoting interventions, ultimately aiming to mitigate the elevated morbidity and mortality rates associated with congenital heart defects (CHD). Methods This multicenter survey will be conducted across various German university facilities with expertise in ACHD. Data collection will encompass real-world treatment scenarios and clinical trajectories in ACHD with manifest HF or at risk for its development, including those undergoing medical or interventional cardiac therapies, cardiac surgery, inclusive of pacemaker or ICD implantation, resynchronization therapy, assist devices, and those on solid organ transplantation. Design The study adopts an observational, exploratory design, prospectively gathering data from participating centers, with a focus on patient management and outcomes. The study is non-confirmatory, aiming to accumulate a broad spectrum of data to inform future hypotheses and studies. Processes Regular follow-ups will be conducted, systematically collecting data during routine clinical visits or hospital admissions, encompassing alterations in therapy or CHD-related complications, with visit schedules tailored to individual clinical needs. Assessments Baseline assessments and regular follow-ups will entail comprehensive assessments of medical history, ongoing treatments, and outcomes, with a focus on HF symptoms, cardiac function, and overall health status. Discussion of the design The design of the PATHFINDER-CHD Registry is tailored to capture a wide range of data, prioritizing real-world HF management in ACHD. Its prospective nature facilitates longitudinal data acquisition, pivotal for comprehending for disease progression and treatment impacts. Conclusion The PATHFINDER-CHD Registry is poised to offer valuable insights into HF management in ACHD, bridging current knowledge gaps, enhancing patient care, and shaping future research endeavors in this domain.https://doi.org/10.1186/s12872-024-03833-yCongenital heart defectsAdult congenital heart diseaseACHDHeart failureProspective registryPatient outcomes |
| spellingShingle | Sebastian Freilinger Harald Kaemmerer Robert D. Pittrow Stefan Achenbach Stefan Baldus Oliver Dewald Peter Ewert Annika Freiberger Matthias Gorenflo Frank Harig Christopher Hohmann Stefan Holdenrieder Jürgen Hörer Michael Huntgeburth Michael Hübler Niko Kohls Frank Klawonn Rainer Kozlik-Feldmann Renate Kaulitz Dirk Loßnitzer Friedrich Mellert Nicole Nagdyman Johannes Nordmeyer Benjamin A. Pittrow Leonard B. Pittrow Carsten Rickers Stefan Rosenkranz Jörg Schelling Christoph Sinning Mathieu N. Suleiman Yskert von Kodolitsch Fabian von Scheidt Ann-Sophie Kaemmerer-Suleiman PATHFINDER-CHD: prospective registry on adults with congenital heart disease, abnormal ventricular function, and/or heart failure as a foundation for establishing rehabilitative, prehabilitative, preventive, and health-promoting measures: rationale, aims, design and methods BMC Cardiovascular Disorders Congenital heart defects Adult congenital heart disease ACHD Heart failure Prospective registry Patient outcomes |
| title | PATHFINDER-CHD: prospective registry on adults with congenital heart disease, abnormal ventricular function, and/or heart failure as a foundation for establishing rehabilitative, prehabilitative, preventive, and health-promoting measures: rationale, aims, design and methods |
| title_full | PATHFINDER-CHD: prospective registry on adults with congenital heart disease, abnormal ventricular function, and/or heart failure as a foundation for establishing rehabilitative, prehabilitative, preventive, and health-promoting measures: rationale, aims, design and methods |
| title_fullStr | PATHFINDER-CHD: prospective registry on adults with congenital heart disease, abnormal ventricular function, and/or heart failure as a foundation for establishing rehabilitative, prehabilitative, preventive, and health-promoting measures: rationale, aims, design and methods |
| title_full_unstemmed | PATHFINDER-CHD: prospective registry on adults with congenital heart disease, abnormal ventricular function, and/or heart failure as a foundation for establishing rehabilitative, prehabilitative, preventive, and health-promoting measures: rationale, aims, design and methods |
| title_short | PATHFINDER-CHD: prospective registry on adults with congenital heart disease, abnormal ventricular function, and/or heart failure as a foundation for establishing rehabilitative, prehabilitative, preventive, and health-promoting measures: rationale, aims, design and methods |
| title_sort | pathfinder chd prospective registry on adults with congenital heart disease abnormal ventricular function and or heart failure as a foundation for establishing rehabilitative prehabilitative preventive and health promoting measures rationale aims design and methods |
| topic | Congenital heart defects Adult congenital heart disease ACHD Heart failure Prospective registry Patient outcomes |
| url | https://doi.org/10.1186/s12872-024-03833-y |
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