ReviewJournal of multidisciplinary healthcare2016
The role of the multidisciplinary health care team in the management of patients with Marfan syndrome.
Review in Journal of multidisciplinary healthcare, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 2 of them syntheses that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
24 citing papers in PubMed, 2 syntheses or guidelines pooled it, 72 citations in OpenAlex.
- Consensus Guidelines for Ocular Surveillance of von Hippel-Lindau Disease.Ophthalmology · 2024Pooled it
- Oral Health Status in Marfan Syndrome: A Systematic Review and Meta-Analysis of 353 Cases.International journal of environmental research and public health · 2022Pooled it
- King Aorta: Narrative anatomy education.Anatomical sciences education · 2025Trial
- Long-term Outcomes of Fenestrated and Branched Endovascular Aortic Repair for Complex Aortic Aneurysms in a High-volume Aortic Center.Annals of surgery · 2026Article
- Hybrid prosthesis in frozen elephant trunk procedures for hereditary thoracic aortic diseases: a 14-year single-aortic center experience.Journal of cardiothoracic surgery · 2025Article
- Article
- Interpretation and classification of FBN1 variants associated with Marfan syndrome: consensus recommendations from the Clinical Genome Resource's FBN1 variant curation expert panel.Genome medicine · 2024Article
- Article
- Magnetic resonance angiography derived predictors of progressive dilatation and surgery of the aortic root in Marfan syndrome.PloS one · 2022Article
- Association between subjective well-being and perception of medical care system among patients with Marfan syndrome: A cross-sectional study.Molecular genetics & genomic medicine · 2021Article
- Provision of medical health care for adults with congenital heart disease associated with aortic involvement.Cardiovascular diagnosis and therapy · 2021Article
- Quality of life of children with spinal muscular atrophy and their caregivers from the perspective of caregivers: a Chinese cross-sectional study.Orphanet journal of rare diseases · 2021Article
- Multidisciplinary aortopathy clinics: A systematic scoping review of the literature and evaluation of patient experiences from a newly started clinic in Norway.American journal of medical genetics. Part A · 2020Article
- Reliability of non-contrast magnetic resonance angiography-derived aortic diameters in Marfan patients: comparison of inner vs. outer vessel wall measurements.The international journal of cardiovascular imaging · 2020Article
- Article
- A Review of Psychosocial Factors of Marfan Syndrome: Adolescents, Adults, Families, and Providers.Journal of pediatric genetics · 2019Review
- Improving medical care and prevention in adults with congenital heart disease-reflections on a global problem-part II: infective endocarditis, pulmonary hypertension, pulmonary arterial hypertension and aortopathy.Cardiovascular diagnosis and therapy · 2018Review
- The transition of pediatric Marfan patients to adult care: a challenge and its risks.Cardiovascular diagnosis and therapy · 2018Article
- Ocular manifestation in Marfan syndrome: corneal biomechanical properties relate to increased systemic score points.Graefe's archive for clinical and experimental ophthalmology = Albrecht von Graefes Archiv fur klinische und experimentelle Ophthalmologie · 2018Observational
- MicroCT imaging reveals differential 3D micro-scale remodelling of the murine aorta in ageing and Marfan syndrome.Theranostics · 2018Article
Corrections and comments
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Authors and funding
30 authors at 9 institutions in 6 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Marfan syndrome (MFS) is a rare, severe, chronic, life-threatening disease with multiorgan involvement that requires optimal multidisciplinary care to normalize both prognosis and quality of life. In this article, each key team member of all the medical disciplines of a multidisciplinary health care team at the Hamburg Marfan center gives a personal account of his or her contribution in the management of patients with MFS. The authors show how, with the support of health care managers, key team members organize themselves in an organizational structure to create a common meaning, to maximize therapeutic success for patients with MFS. First, we show how the initiative and collaboration of patient representatives, scientists, and physicians resulted in the foundation of Marfan centers, initially in the US and later in Germany, and how and why such centers evolved over time. Then, we elucidate the three main structural elements; a team of coordinators, core disciplines, and auxiliary disciplines of health care. Moreover, we explain how a multidisciplinary health care team integrates into many other health care structures of a university medical center, including external quality assurance; quality management system; clinical risk management; center for rare diseases; aorta center; health care teams for pregnancy, for neonates, and for rehabilitation; and in structures for patient centeredness. We provide accounts of medical goals and standards for each core discipline, including pediatricians, pediatric cardiologists, cardiologists, human geneticists, heart surgeons, vascular surgeons, vascular interventionists, orthopedic surgeons, ophthalmologists, and nurses; and of auxiliary disciplines including forensic pathologists, radiologists, rhythmologists, pulmonologists, sleep specialists, orthodontists, dentists, neurologists, obstetric surgeons, psychiatrist/psychologist, and rehabilitation specialists. We conclude that a multidisciplinary health care team is a means to maximize therapeutic success.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.