The GFPD Patient Registry for Peroxisomal Disorders collects disease-specific natural history data about individuals with peroxisomal disorders, with the goal of improving the understanding of peroxisomal disorders 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
We are interested in sharing our data with you! If you would like access to The GFPD Patient Registry for Peroxisomal Disorders data for a research project, please contact our registry administrator at patientregistry@thegfpd.org for more information. Access to The GFPD Patient Registry for Peroxisomal Disorders data is contingent upon project approval by The GFPD Patient Registry for Peroxisomal Disorders Advisory Board.