Registry following people with rare severe pustular psoriasis over time
Records the natural course and features of pustular psoriasis subtypes in patients.
Plain-language title generated from the registry record
Registry title: International Rare And Severe Psoriasis Expert Network
Key facts
- Where
- München, GermanySee the site
Where in Germany
- Klinikum der Universität MünchenMünchen, GermanyTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- University Hospital, Basel, Switzerland
- Trial code
- NCT04359394
- Record updated
- 9 May 2024
- Original description
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.Read full original descriptionShow less
International Rare And Severe Psoriasis Expert Network (IRASPEN) - A Prospective Registry With Genotype-Phenotype Correlation
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.
Inclusion: 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: 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.