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NCT04359394 | RECRUITING | Pustular Psoriasis (PP)

International Rare And Severe Psoriasis Expert Network
Sponsor:

University Hospital, Basel, Switzerland

Brief Summary:

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.

Condition or disease

PP)

Intervention/treatment

biological sampling

Phenotypic description

Photography

Detailed Description:

This project is to describe the natural course of disease in different subtypes of PP. The network builds on a static registry that was based on a one-time clinical characterization of PP patients in Europe (ERASPEN). The International Rare and Severe Psoriasis Expert Network (IRASPEN) already has multiple clinicians involved who have successfully characterized and included their patients in ERASPEN. IRASPEN addresses the question of temporal evolution of clinical features and is actually a non-interventional prospective registry that aims to describe the clinical course and responses to already established treatments of a large number of PP patients over a period of 5 years. The data collection with this registry will give insight on the natural course of PP disease revealing the burden of disease including frequency and severity of flares and the role of therapeutic interventions.

Study Type : OBSERVATIONAL
Estimated Enrollment : 180 participants
Official Title : International Rare And Severe Psoriasis Expert Network (IRASPEN) - A Prospective Registry With Genotype-Phenotype Correlation
Actual Study Start Date : 2021-09-22
Estimated Primary Completion Date : 2030-12
Estimated Study Completion Date : 2030-12

Information not available for Arms and Intervention/treatment

Ages Eligible for Study: 6 Months
Sexes Eligible for Study: ALL
Accepts Healthy Volunteers:
Criteria
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
International Rare And Severe Psoriasis Expert Network

Location Details

NCT04359394

Please Choose a site

How to Participate

Want to participate in this study, select a site at your convenience, send yourself email to get contact details and prescreening steps.

Locations

RECRUITING

Germany,

Clinic of the University of Munich

München, Germany, 80337

RECRUITING

Italy,

"Agostino Gemelli" University Polyclinic Foundation

Rome, Italy, 00168

RECRUITING

Portugal,

Porto University

Porto, Portugal, 4150-117

RECRUITING

Singapore,

National Skin Centre

Singapore, Singapore, 308205

RECRUITING

Switzerland,

Dermatology, University Hospital Basel

Basel, Switzerland, 4031

RECRUITING

Switzerland,

University Hospital Zürich

Zürich, Switzerland, 8058

RECRUITING

Turkey,

Akdeniz University School of Medicine; Department of Dermatology and Venereology

Antalya, Turkey, 07059

RECRUITING

Turkey,

Trakya University, Faculty of Medicine; Department of Dermatology and Venereology

Edirne, Turkey,