RECRUITINGOBSERVATIONAL
International Rare And Severe Psoriasis Expert Network
International Rare And Severe Psoriasis Expert Network (IRASPEN) - A Prospective Registry With Genotype-Phenotype Correlation
About This Trial
This registry is a prospective observational study in order to describe primarily the natural course of PP subtypes and to gain detailed information about their phenotype.
Who May Be Eligible (Plain English)
Who May Qualify:
- Written willing to sign a consent form of the patient or legal proxy in the registry
- Diagnosis of PP confirmed by a dermatologist in the participant. The type of PP can be any one of PPP, GPP/Acute Generalized Exanthematous Pustulosis (AGEP), ACH or a mixed phenotype, according to the judgment of the investigator
- GPP: Primary, sterile, macroscopically visible epidermal pustules on non-acral Skin with or without systemic Inflammation; with or without plaque psoriasis; either relapsing (\>1 episode) or persistent (\>3 months)
- PPP: Primary, persistent (\>3 months), sterile, macroscopically visible epidermal pustules on palms and/or soles with or without plaque psoriasis
- ACH: Primary, persistent (\>3 months), sterile, macroscopically visible epidermal pustules affecting the nail apparatus with or without plaque psoriasis
- At the timepoint of inclusion, the participant must have had active pustulation with either white, yellow or brown pustules within six month before baseline. Active postulation at baseline is not mandatory for inclusion.
- Sufficient language skills (in the languages which the patient information and the consent form is available) for the willing to sign a consent form to participate
- Patients of all ancestries and skin pigment type can be included
- Direct non-affected adult (\>18 years old) relatives of the participant (up to two, namely mother, father, sibling) with the purpose to provide DNA for family trio sequencing analysis. The patient is not excluded from the study if no relatives are included.
Who Should NOT Join This Trial:
- Any medical or psychological condition in the treating physician's opinion which may prevent the patient in registry participation for the next 5 years
- Lack of willing to sign a consent form for registry participation
Always talk to your doctor about whether this trial is right for you.
Original Eligibility Criteria
View original clinical language
Inclusion Criteria:
* Written informed consent of the patient or legal proxy in the registry
* Diagnosis of PP confirmed by a dermatologist in the participant. The type of PP can be any one of PPP, GPP/Acute Generalized Exanthematous Pustulosis (AGEP), ACH or a mixed phenotype, according to the judgment of the investigator
* GPP: Primary, sterile, macroscopically visible epidermal pustules on non-acral Skin with or without systemic Inflammation; with or without plaque psoriasis; either relapsing (\>1 episode) or persistent (\>3 months)
* PPP: Primary, persistent (\>3 months), sterile, macroscopically visible epidermal pustules on palms and/or soles with or without plaque psoriasis
* ACH: Primary, persistent (\>3 months), sterile, macroscopically visible epidermal pustules affecting the nail apparatus with or without plaque psoriasis
* At the timepoint of inclusion, the participant must have had active pustulation with either white, yellow or brown pustules within six month before baseline. Active postulation at baseline is not mandatory for inclusion.
* Sufficient language skills (in the languages which the patient information and the consent form is available) for the informed consent to participate
* Patients of all ancestries and skin pigment type can be included
* Direct non-affected adult (\>18 years old) relatives of the participant (up to two, namely mother, father, sibling) with the purpose to provide DNA for family trio sequencing analysis. The patient is not excluded from the study if no relatives are included.
Exclusion Criteria:
* Any medical or psychological condition in the treating physician's opinion which may prevent the patient in registry participation for the next 5 years
* Lack of informed consent for registry participation
Treatments Being Tested
OTHER
biological sampling
In order to investigate the level of molecular pathophysiology, blood and punch biopsies will be collected of each patient. In up to two relatives per patient, 30mL blood will be collected only once.
OTHER
Phenotypic description
Phenotypic characterization of the patient's clinical features
OTHER
Photography
All affected areas will be photographed at each visit with 2-dimensional standardized photography
Locations (8)
Klinikum der Universität München
München, Germany
Fondazione Policlinico Universitario "Agostino Gemelli" IRCCS
Rome, Italy
Universitário do Porto
Porto, Portugal
National Skin Centre
Singapore, Singapore
Dermatology, University Hospital Basel
Basel, Switzerland
University Hospital Zürich
Zurich, Switzerland
Akdeniz University School of Medicine; Department of Dermatology and Venereology
Antalya, Turkey (Türkiye)
Trakya University, Faculty of Medicine; Department of Dermatology and Venereology
Edirne, Turkey (Türkiye)