“Registries for Rare Diseases: Involve the Patient” http://www.medscape.com/
The IPPF Natural History Registry collects disease-specific natural history data about individuals with pemphigus and pemphigoid, with the goal of improving the understanding of; disease incidence, understand the variability of the disease, identify the disease burden, and perhaps most importantly, develop patient-centered outcome measures to ensure a clinical trial is adequately designed. Registry questionnaires were built from common data element standards and cover the following topics:
If you would like access to the IPPF Registry Demo data for a research project, please contact our registry administrator at firstname.lastname@example.org. Access to IPPF Registry data is contingent upon project approval by the IPPF Natural History Advisory Board.