Registry goals

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

• Quality of Life Scores
  • DLQI
  • EQ-5D
  • WPAI-GH
  • PSS 

• 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.