Valérie Bousson1, Caroline Rey-Jouvin2, Jean-Denis Laredo3, Martine Le Merrer4, Nadine Martin-Duverneuil5, Antoine Feydy6, Sébastien Aubert7, Roland Chapurlat8, Philippe Orcel9. 1. Radiologie Ostéo-Articulaire, AP-HP, Hôpital Lariboisière, 2 rue Ambroise Paré, 75010 Paris, France; Université Paris VII Denis Diderot, Sorbonne Paris Cité, France. Electronic address: valerie.bousson@lrb.aphp.fr. 2. Rhumatologie Viggo Petersen, AP-HP, Hôpital Lariboisière, 2 rue Ambroise Paré, 75010 Paris, France; Université Paris VII Denis Diderot, Sorbonne Paris Cité, France. Electronic address: c.reyjouvin@gmail.com. 3. Radiologie Ostéo-Articulaire, AP-HP, Hôpital Lariboisière, 2 rue Ambroise Paré, 75010 Paris, France; Université Paris VII Denis Diderot, Sorbonne Paris Cité, France. Electronic address: jean-denis.laredo@lrb.aphp.fr. 4. Service de génétique médicale, AP-HP, Hôpital Necker - Enfants malades, 149 rue de Sèvres, 75743 Paris Cedex 15, France. Electronic address: martine.lemerrer@inserm.fr. 5. Service de Neuroradiologie, AP-HP, Hôpital Pitié Salpêtrière, 47 Boulevard de l'hôpital, 75013 Paris, France. Electronic address: nadine.martin-duverneuil@psl.aphp.fr. 6. Service de Radiologie B, AP-HP, Hôpital Cochin, 27 rue du Faubourg Saint-Jacques, 75014 Paris, France. Electronic address: antoine.feyfy@cch.aphp.fr. 7. Service Anatomie Pathologique, CHRU Lille, Avenue Oscar Lambret, 59037 Lille Cedex, France. Electronic address: sebastien.aubert@chru-lille.fr. 8. INSERM UMR 1033, Université de Lyon, France; Service de rhumatologie et de pathologie osseuse, CHU de Lyon Hôpital Édouard Herriot, 5, place d'Arsonval, 69437 Lyon Cedex 03, France. Electronic address: roland.chapurlat@inserm.fr. 9. Rhumatologie Viggo Petersen, AP-HP, Hôpital Lariboisière, 2 rue Ambroise Paré, 75010 Paris, France; Université Paris VII Denis Diderot, Sorbonne Paris Cité, France. Electronic address: philippe.orcel@lrb.aphp.fr.
Abstract
PURPOSE: The radiologist plays a critical role at all steps of the management of patients with fibrous dysplasia (FD) and McCune-Albright syndrome (MAS). The development of a standardized approach to the management of FD/MAS is crucial given the low incidence and multiple clinical presentations of these conditions. Our aim was to develop recommendations for bone imaging in FD/MAS management. MATERIALS AND METHODS: The establishment of National Reference Centers in France as part of a Health Ministry program for orphan diseases has triggered the development of recommendations for the clinical management of FD/MAS. We used a well-established robust methodological approach involving an extensive literature review by a multidisciplinary working group (20 healthcare professionals) and scoring by a peer-review group (20 healthcare professionals different from the 20 previous ones). There were four phases: a systematic literature review, drafting of initial recommendations, peer-review of this initial draft, and drafting of the final recommendations. RESULTS: Fifty-seven specific recommendations are provided as key points for the diagnosis, prognosis, and follow-up of patients with FD/MAS. Issues of special interest are highlighted in the discussion, and areas in which future research is needed are identified. CONCLUSION: We believe the dissemination of these recommendations within the radiology community may facilitate communication between radiologists and other healthcare providers, thereby substantially improving the management of patients with these rare but potentially disabling conditions.
PURPOSE: The radiologist plays a critical role at all steps of the management of patients with fibrous dysplasia (FD) and McCune-Albright syndrome (MAS). The development of a standardized approach to the management of FD/MAS is crucial given the low incidence and multiple clinical presentations of these conditions. Our aim was to develop recommendations for bone imaging in FD/MAS management. MATERIALS AND METHODS: The establishment of National Reference Centers in France as part of a Health Ministry program for orphan diseases has triggered the development of recommendations for the clinical management of FD/MAS. We used a well-established robust methodological approach involving an extensive literature review by a multidisciplinary working group (20 healthcare professionals) and scoring by a peer-review group (20 healthcare professionals different from the 20 previous ones). There were four phases: a systematic literature review, drafting of initial recommendations, peer-review of this initial draft, and drafting of the final recommendations. RESULTS: Fifty-seven specific recommendations are provided as key points for the diagnosis, prognosis, and follow-up of patients with FD/MAS. Issues of special interest are highlighted in the discussion, and areas in which future research is needed are identified. CONCLUSION: We believe the dissemination of these recommendations within the radiology community may facilitate communication between radiologists and other healthcare providers, thereby substantially improving the management of patients with these rare but potentially disabling conditions.
Authors: A M Boyce; A Turner; L Watts; L Forestier-Zhang; A Underhill; R Pinedo-Villanueva; F Monsell; D Tessaris; C Burren; L Masi; N Hamdy; M L Brandi; R Chapurlat; M T Collins; Muhammad Kassim Javaid Journal: Arch Osteoporos Date: 2017-02-27 Impact factor: 2.617
Authors: Anthony Tucker-Bartley; Jordan Lemme; Andrea Gomez-Morad; Nehal Shah; Miranda Veliu; Frank Birklein; Claudia Storz; Seward Rutkove; David Kronn; Alison M Boyce; Eduard Kraft; Jaymin Upadhyay Journal: Neurosci Biobehav Rev Date: 2021-02-10 Impact factor: 9.052