IPPK – Ichthyosis and Palmoplantar Keratoderma (IPPK)
Thematic group
Chair and Focus
Related Conditions
Participating Reference Centres
- AOU Città della Salute e della Scienza di Torino – Torino
- AOU Meyer di Firenze – Italy
- AOU Padua – Azienda Ospedale Università di Padova
- APHP – Hôpital Necker-Enfants malades
- ASL Tuscan Centre
- Barts Health NHS Trust
- Birmingham Children’s Hospital NHS Foundation Trust
- Children’s Health Ireland
- CHU de Toulouse
- Erasmus MC: University Medical Center Rotterdam
- Foundation IRCCS CA’Granda Ospedale Maggiore polyclinic – Milan
- Great Ormond Street Hospital for Children NHS Foundation Trust
- Guy’s and St Thomas’ NHS Foundation Trust – Dept. Of Dermatology
- Helsinki University Hospital
- Hospital Clínic i Provincial de Barcelona y Hospital de Sant Joan de Déu
- Hospital Na Bulovce
- Hospital of Lithuanian University of Health Sciences Kauno Klinikos
- IRCCS IDI Foundation Luigi Maria Monti – Rome
- Klinikum der Universität München
- Maastricht University Medical Center+
- Medical University of Innsbruck
- Odense University Hospital
- Pediatric hospital Bambino Gesù – Rome
- Semmelweis University
- Universitätsklinikum Freiburg – Center for Skin Fragility & Epidermolysis bullosa
- Universitätsklinikum Freiburg – Institute for Human Genetics
- Universitätsklinikum Münster
- Universitätsmedizin Rostock
- University Hospital Brno
- University Hospital Leuven
- University Medical Center Utrecht – Rotterdam
- University Medical Centre Groningen
- Uppsala University Hospital
Dashboard
Legend for guidelines and publications
Clinical Outcome Measures
No public document yet
Guidelines & Recommendations
- Neonatal erythroderma: Step wise approach
- Management of congenital ichthyoses: European guidelines of care – Part I.
- Management of congenital ichthyoses: European guidelines of care – Part II.
- Ichthyoses – Part 2: Congenital ichthyoses
- Ichthyoses – Part 1: Differential diagnosis of vulgar ichthyoses and therapeutic options
Patient Documents
- Care4Netherton is the project to improve the care for people with netherton syndrome, by defining outcome measures to evaluate care and therapy
- Ichthyosis Guidelines for Patients
- Ichthyosis Guidelines for Patients
- Red Scaly Baby – Animation based on a true story
- Saskia and her daughter Olivia talk about having Netherton syndrome and what this means in daily life
- Alternative to scratching – French
- Corrective makeup for ichthyotic skin – French
- Family burden in inherited ichthyosis: creation of a specific questionnaire
- Handbuch für Lehrer, Eltern und Schüler
- Handbuch Ichthyose Auflage 2015 Druck 2016-1 Patient Germ
- Hospital Anxiety and Depression Scale (HADS)
- Ichthyose – Merkblatt für Lehrer-2 School Germ
- IPPK – Patient Document – Presentation
- IQoL-32: A new ichthyosis-specific measure of quality of life
- Questionnaire: Coping skills
- Questionnaire: What you know about ichthyosis treatment?
- Questionnaire: What you know about ichthyosis?
- Quizz about IPPK (French)
- Rosenberg self-esteem scale
- Tools list 24/12/2019
Publications
- Mutational Spectrum of the ABCA12 Gene and Genotype–Phenotype Correlation in a Cohort of 64 Patients with Autosomal Recessive Congenital Ichthyosis
- Proposal for a 6-step approach for differential diagnosis of neonatal erythroderma
- Hereditary palmoplantar keratoderma – phenotypes and mutations in 64 patients
- Meta-Analysis of Mutations in ALOX12B or ALOXE3 Identified in a Large Cohort of 224 Patients
- Treatment of hereditary palmoplantar keratoderma: a review by analysis of the literature
- Correction to: Italian translation, cultural adaptation, and pilot testing of a questionnaire to assess family burden in inherited ichthyoses
- Phenotypic Variability with SLURP1 Mutations and Diffuse Palmoplantar Keratoderma
- Genetical, clinical, and functional analysis of a large international cohort of patients with autosomal recessive congenital ichthyosis due to mutations in NIPAL4
- Burden of itch in ichthyosis: a multicentre study in 94 patients
- Italian translation, cultural adaptation, and pilot testing of a questionnaire to assess family burden in inherited ichthyoses
- Alitretinoin in punctate palmoplantar keratoderma
- Alitretinoin reduces erythema in inherited ichthyosis
- Hereditary palmoplantar keratodermas. Part II: syndromic palmoplantar keratodermas – Diagnostic algorithm and principles of therapy
- Hereditary palmoplantar keratodermas. Part I. Non-syndromic palmoplantar keratodermas: classification, clinical and genetic features
Training
No public document yet