Objectives of the registry
- To give insight on the natural course of disease in PP, namely reveal the burden of disease including frequency and severity of flares
- To reveal the need and efficacy of therapeutic interventions
- To reveal further genetic causes of PP
- To describe transcriptional profiles, correlating with subtypes and severity of disease
Primary and secondary endpoints
- Objective disease activity:
- Number of flares in the last 2 years (baseline) / since the last visit
- PGA (depending on PP subtype, further specified as GPP PGA, PPP PGA)
- PP area and severity score, namely GPP ASI, PPP ASI
- Patient reported outcomes:
- Disease activity VAS
- Pain VAS
The variable of primary interest (corresponding to an endpoint in a clinical trial) is the PGA / IGA severity grade, and as it is an observational study, both the first as well as all other visits are relevant.
