For Researchers
The International Pemphigus & Pemphigoid Foundation Natural History Registry collects disease-specific natural history data about individuals with Pemphigus and Pemphigoid, with the goal of improving the understanding of Pemphigus and Pemphigoid and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:
- Socio-demographics
- Medical history and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
- Clinical trial participation
- Clinical Disease Presentation
We are interested in sharing our data with you! If you would like access to the International Pemphigus & Pemphigoid Foundation Natural History Registry data for a research project, please contact our registry administrator at registry@pemphigus.org or more information. Access to the International Pemphigus & Pemphigoid Foundation Natural History Registry data is contingent upon project approval by the International Pemphigus & Pemphigoid Foundation Natural History Registry Advisory Board.