Management of congenital ichthyoses: European guidelines of care, part one

J Mazereeuw-Hautier¹, A Vahlquist², H Traupe³, A Bygum⁴, C Amaro⁵, M Aldwin⁶, A Audouze⁷, C Bodemer^{8

9}, E Bourrat⁸, A Diociaiuti¹⁰, M Dolenc-Voljc¹¹, I Dreyfus¹, M El Hachem¹⁰, J Fischer¹², A Gånemo¹³, C Gouveia¹⁴, R Gruber¹⁵, S Hadj-Rabia^{8

9}, D Hohl¹⁶, N Jonca¹⁷, K Ezzedine¹⁸, D Maier¹⁹, R Malhotra²⁰, M Rodriguez²¹, H Ott²², D G Paige²³, A Pietrzak²⁴, F Poot²⁵, M Schmuth¹⁵, J C Sitek²⁶, P Steijlen²⁷, G Wehr²⁸, M Moreen^{29

30}, E A O'Toole³¹, V Oji^{3

32}, A Hernandez-Martin³³

Affiliations

¹ Reference Centre for Rare Skin Diseases, Dermatology Department, Larrey Hospital, Toulouse, France.
² Department of Medical Sciences, Uppsala University, Uppsala, Sweden.
³ Department of Dermatology, University Hospital of Münster, Von-Esmarch-Straße 58,, D-48149, Münster, Germany.
⁴ Department of Dermatology and Allergy Centre, Odense University Hospital, Odense, Denmark.
⁵ Hospital de Egas Moniz, Centro Hospitalar Lisboa Ocidental, Lisbon, Portugal.
⁶ Ichthyosis Support Group, PO Box 1242, Yateley, GU47 7FL, U.K.
⁷ Association Ichtyose France, Bellerive sur Allier, France.
⁸ Department of Dermatology, Reference Center for Genodermatoses and Rare Skin Diseases (MAGEC), Paris, France.
⁹ Institut Imagine, Université Descartes, Sorbonne Paris Cité, Hôpital Necker-Enfants Malades, Paris.
¹⁰ Dermatology Division, Bambino Gesù Children's Hospital-IRCCS, Rome, Italy.
¹¹ Department of Dermatovenereology, University Medical Centre Ljubljana, Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia.
¹² Institute of Human Genetics, Medical Center - University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany.
¹³ Department of Dermatology, Institute of Clinical Research in Malmö, Skåne University Hospital, Lund University, Malmö, Sweden.
¹⁴ Department of Dermatology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
¹⁵ Department of Dermatology, Venereology and Allergology, Medical University of Innsbruck, Innsbruck, Austria.
¹⁶ Department of Dermatology, Hôpital de Beaumont, Lausanne, Switzerland.
¹⁷ Epithelial Differentiation and Rheumatoid Autoimmunity Unit (UDEAR), UMR 1056 Inserm - Toulouse 3 University, Purpan Hospital, Toulouse, France.
¹⁸ Department of Dermatology, Hôpital Henri Mondor, EA EpiDerm, UPEC-Université Paris-Est Créteil, 94010, Créteil, France.
¹⁹ Dermatology Department, Iuliu Haţieganu University of Medicine and Pharmacy, Cluj-Napoca, Romania.
²⁰ Corneoplastic Unit, Queen Victoria Hospital NHS Trust, East Grinstead, U.K.
²¹ Department of Ear, Nose and Throat, Hospital Universitario Son Espases, Palma de Mallorca, Spain.
²² Division of Pediatric Dermatology and Allergology, Auf Der Bult Children's Hospital, Hanover, Germany.
²³ Department of Dermatology, Royal London Hospital, Barts Health NHS Trust, London, E1 1BB, U.K.
²⁴ Department of Dermatology, Venereology and Paediatric Dermatology, Medical University of Lublin, Lublin, Poland.
²⁵ ULB-Erasme Hospital, Department of Dermatology, Brussels, Belgium.
²⁶ Department of Dermatology and Centre for Rare Disorders, Oslo University Hospital, Oslo, Norway.
²⁷ Department of Dermatology, Maastricht University Medical Centre, GROW Research School for Oncology and Developmental Biology, Maastricht, the Netherlands.
²⁸ Selbsthilfe Ichthyose, Kürten, Germany.
²⁹ Department of Dermatology, University Hospitals Leuven, Leuven, Belgium.
³⁰ Department of Microbiology and Immunology, KU Leuven, Belgium.
³¹ Centre for Cell Biology and Cutaneous Research, Blizard Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, U.K.
³² Hautarztpraxis am Buddenturm, Rudolf-von-Langen-Straße 55, D-48147, Münster, Germany.
³³ Department of Dermatology, Hospital Infantil Niño Jesús, Madrid, Spain.

PMID: 30216406
DOI: 10.1111/bjd.17203

Practice Guideline

Management of congenital ichthyoses: European guidelines of care, part one

J Mazereeuw-Hautier et al. Br J Dermatol. 2019 Feb.

. 2019 Feb;180(2):272-281.

doi: 10.1111/bjd.17203. Epub 2018 Dec 3.

Authors

Affiliations

¹ Reference Centre for Rare Skin Diseases, Dermatology Department, Larrey Hospital, Toulouse, France.
² Department of Medical Sciences, Uppsala University, Uppsala, Sweden.
³ Department of Dermatology, University Hospital of Münster, Von-Esmarch-Straße 58,, D-48149, Münster, Germany.
⁴ Department of Dermatology and Allergy Centre, Odense University Hospital, Odense, Denmark.
⁵ Hospital de Egas Moniz, Centro Hospitalar Lisboa Ocidental, Lisbon, Portugal.
⁶ Ichthyosis Support Group, PO Box 1242, Yateley, GU47 7FL, U.K.
⁷ Association Ichtyose France, Bellerive sur Allier, France.
⁸ Department of Dermatology, Reference Center for Genodermatoses and Rare Skin Diseases (MAGEC), Paris, France.
⁹ Institut Imagine, Université Descartes, Sorbonne Paris Cité, Hôpital Necker-Enfants Malades, Paris.
¹⁰ Dermatology Division, Bambino Gesù Children's Hospital-IRCCS, Rome, Italy.
¹¹ Department of Dermatovenereology, University Medical Centre Ljubljana, Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia.
¹² Institute of Human Genetics, Medical Center - University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany.
¹³ Department of Dermatology, Institute of Clinical Research in Malmö, Skåne University Hospital, Lund University, Malmö, Sweden.
¹⁴ Department of Dermatology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
¹⁵ Department of Dermatology, Venereology and Allergology, Medical University of Innsbruck, Innsbruck, Austria.
¹⁶ Department of Dermatology, Hôpital de Beaumont, Lausanne, Switzerland.
¹⁷ Epithelial Differentiation and Rheumatoid Autoimmunity Unit (UDEAR), UMR 1056 Inserm - Toulouse 3 University, Purpan Hospital, Toulouse, France.
¹⁸ Department of Dermatology, Hôpital Henri Mondor, EA EpiDerm, UPEC-Université Paris-Est Créteil, 94010, Créteil, France.
¹⁹ Dermatology Department, Iuliu Haţieganu University of Medicine and Pharmacy, Cluj-Napoca, Romania.
²⁰ Corneoplastic Unit, Queen Victoria Hospital NHS Trust, East Grinstead, U.K.
²¹ Department of Ear, Nose and Throat, Hospital Universitario Son Espases, Palma de Mallorca, Spain.
²² Division of Pediatric Dermatology and Allergology, Auf Der Bult Children's Hospital, Hanover, Germany.
²³ Department of Dermatology, Royal London Hospital, Barts Health NHS Trust, London, E1 1BB, U.K.
²⁴ Department of Dermatology, Venereology and Paediatric Dermatology, Medical University of Lublin, Lublin, Poland.
²⁵ ULB-Erasme Hospital, Department of Dermatology, Brussels, Belgium.
²⁶ Department of Dermatology and Centre for Rare Disorders, Oslo University Hospital, Oslo, Norway.
²⁷ Department of Dermatology, Maastricht University Medical Centre, GROW Research School for Oncology and Developmental Biology, Maastricht, the Netherlands.
²⁸ Selbsthilfe Ichthyose, Kürten, Germany.
²⁹ Department of Dermatology, University Hospitals Leuven, Leuven, Belgium.
³⁰ Department of Microbiology and Immunology, KU Leuven, Belgium.
³¹ Centre for Cell Biology and Cutaneous Research, Blizard Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, U.K.
³² Hautarztpraxis am Buddenturm, Rudolf-von-Langen-Straße 55, D-48147, Münster, Germany.
³³ Department of Dermatology, Hospital Infantil Niño Jesús, Madrid, Spain.

PMID: 30216406
DOI: 10.1111/bjd.17203

Abstract

These guidelines for the management of congenital ichthyoses have been developed by a multidisciplinary group of European experts following a systematic review of the current literature, an expert conference held in Toulouse in 2016 and a consensus on the discussions. They summarize evidence and expert-based recommendations and are intended to help clinicians with the management of these rare and often complex diseases. These guidelines comprise two sections. This is part one, covering topical therapies, systemic therapies, psychosocial management, communicating the diagnosis and genetic counselling.

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Comment in

Consensus, collaboration and care coordination.
Levy ML. Levy ML. Br J Dermatol. 2019 Feb;180(2):253. doi: 10.1111/bjd.17439. Br J Dermatol. 2019. PMID: 30714109 No abstract available.

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Management of congenital ichthyoses: European guidelines of care, part one

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Management of congenital ichthyoses: European guidelines of care, part one

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